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Sunday, November 7, 2010 9:41 AM CST
Madeline Britton Trimper, we miss you.
Sunday, July 4, 2010 7:26 AM CDT
Hello. It's been a long time. We just wanted to update on the boys.
Sam: Sam is doing great. He's having a great summer so far. He's keeping busy by swimming, riding his bike, bonfires, having friends over...Very energetic 11 year old boy. All his test from Duke were stable. This is good.
Max: Max is also doing great. His test also came back stable from Duke. Max is in the DeVos Children's Hospital. He is scheduled for surgery tomorrow (July 2) on his back. They are putting "rods" in his back to correct his scoliosis. It's a major surgery. He'll be in the hospital for about a week. He will be in the ICU for a few days, then moved to a regular room.
The rest of the summer will be home recovery for Max. So it should be a quiet July/August.
Have a good summer.
Jeff
Maddie
Forever
For always
And no matter what
Saturday, November 7, 2009 10:02 AM CST
Hello. It's been a long time. We just wanted to update on the boys.
Sam: Sam is doing great. He's having a great summer so far. He's keeping busy by swimming, riding his bike, bonfires, having friends over...Very energetic 11 year old boy. All his test from Duke were stable. This is good.
Max: Max is also doing great. His test also came back stable from Duke. Max is in the DeVos Children's Hospital. He is scheduled for surgery tomorrow (July 2) on his back. They are putting "rods" in his back to correct his scoliosis. It's a major surgery. He'll be in the hospital for about a week. He will be in the ICU for a few days, then moved to a regular room.
The rest of the summer will be home recovery for Max. So it should be a quiet July/August.
Have a good summer.
Jeff
Maddie
Forever
For always
And no matter what
Wednesday, April 29, 2009 6:37 PM CDT
Hello.
Well, I thought it was time for an update and share what we’ve been up to the last six months.
First, it’s nice to see green grass coming out and flowers. It was a long, cold, snowy winter. But we all made it through as usual. Well, most of us.
Happy Birthday Max! Max is 14 today. He has been having a great school year. He is in the 7th grade in the Middle School. Stacy, his para-pro, is still with him. She’s been great and we’re not sure what we would do without her. Max has been involved in Gym and Art this year. It sounds like he’s having a riot with the other kids. And yes, Max is girl crazy. He likes to roam around the high school halls talking to girls. I think Stacy has a little bit to do with that. Max has also been working with some great PT’s. He has gained some skills back and works very hard. We’re so proud of him and so happy he’s happy.
Sam is going to be 10 this June 14th. Sam has also had a great school year. He is a kid you’d have to look at closely to notice that there is anything wrong with him or realize that he has gone through the things he has. Great kid. Sam is playing soccer this spring. So we keep busy running to practices and games. Sam is also doing PT at the same place Max is (I’ll be there soon). If you know any 10 year old boys, that’s Sam. He’s crazy, energetic and always looking for fun. Thank you, Dr. Kurztberg.
Jane has been doing the interim principal position at her elementary school since January. She’s been doing a great job. I think she really enjoys it. Everywhere I go in town, I hear what a great job she’s doing. We’ll see for next year. She sure loves teaching, too.
Me, well, I’m still teaching 4th grade. I have a great group of kids this year. I had a skiing accident in February this year. I’m still paying for it today. I ripped, tore, broke just about everything you can in a knee. I had major reconstructive surgery two weeks ago. I’m still out of school and off my knee. I also shattered two bones in my hand. I had surgery about a month ago for that. I just got my cast off on my arm. I’ll be back on the slopes! (Don't tell Jane.)
So, you can see we’ve been a little busy. I think Jane needs to get the mother/wife of the year award for taking care of me, the boys and doing such a good job at school. I think (know) we’re all ready for summer. It will be nice to slow down, relax and spend time with the boys.
I hope things are well for all of our fellow hospital and MLD friends. Good things are happening in the research world. Maybe someday we will see a cure for these horrible diseases. Gotta Believe we’ll get there!
Jeff
Thursday, November 6, 2008 6:25 PM CST
Hello.
Well, it’s been awhile. Where do I start? We had a very busy summer. I’ll just list some things that have happened.
-In June, we had another “Kick MLD in the Butt” yard sale to raise money for Maddie’s House.
-We went to many doctor appointments over the summer.
-We did a lot of fishing with some good friends.
-We swam, had campfires, and camped out in the boys’ new clubhouse (boys only).
-We stuck close to home this summer.
-Max started up with PT again. He has gained back some of his strength and endurance.
-Sam played soccer this fall.
-Jane’s grandmother turned 100 years old.
-Both my parents and Jane’s celebrated their 50th wedding anniversaries.
-Went back to Duke for our annual checkup. All good reports.
-Maddie’s House was officially opened November 1.
-Max was Darth Vador and Sam was Obi Wan Kenobi for Halloween.
Fall is always a hard time of year around here. There are so many “anniversary” dates (as you can see on the main page). We try to stay busy to keep our minds clear. It’s not always easy though. It gets tougher as we move towards November 7. Sam seems to be doing much better these days. He had a nice talk with Jane today about Maddie. He seems so wise at times. We worry about how Max is feeling as he can’t always express himself.
Anyway, the fall will come and go and all the memories will always be with us. Great at times, tough at the other times. Before we know it, the holidays will be here. Hope you are all enjoying life and holding your family close.
Jeff
Tuesday, July 22, 2008 1:33 PM CDT
Maddie's House is here! Max and I were supervising the arrival this morning. The park should be finished in early August. It's been a busy crazy (fun) summer. We're having a great time with the boys. Lots of fun and friends. Jeff
TV 8 ran a story on Maddie's House and have the three story segments when they followed us at home and Duke. Brings back good and tough memories. Jeff
http://video.woodtv.com/?video_id=13135
Monday, June 16, 2008 2:19 PM CDT
Sam turned 9 years old this weekend. He had a great time with his friends in the pool. Happy Birthday Sam!
Monday, April 28, 2008 8:04 PM CDT
Tuesday, April 29, 2008, Max becomes a TEENAGER! We are so proud of this young man. I could go on and on about what a great kid he is and what an inspiration he is to us. Gotta keep believing! Happy Birthday Max!
Saturday, March 8, 2008 8:46 AM CST
Hello.
Just wanted to let you know the boys are doing good. We're trying to get through this long winter here in Michigan. We're looking forward to Spring break. We're also continuing to look for ways to raise money for Maddie's House, funding Dr. Kurtzberg's research at Duke, keeping things going for Max and Sam with therapy, equipment, school, missing Maddie... Staying busy.
Jeff
Monday, January 14, 2008 6:41 PM CST
January 17, 1998. Happy Birthday Maddie. We miss you.
Wednesday, November 7, 2007 2:15 PM CST
Dear Friends,
Thank you for the notes. We miss her. Today. Yesterday. And with out a doubt, tomorrow.
Two years.
I was going through her things and found a note that says ‘Mom has a big butt’. I found pictures she had of the boys. I found love notes to Daddy. Love and humor – both so much a part of her.
I found a picture of her at Devos. And I’m reminded about how we watched her suffer. As much as I’d like her back, I am so glad she didn’t suffer even one more day.
Man, she was one great girl.
Love,
Jane
Wednesday, October 3, 2007 4:29 PM CDT
Four years ago today, Maddie and Sam had their transplant. Happy Transplant Anniversary kids. Max was nine-month post transplant.
Monday, July 30, 2007 12:27 AM CDT
Hello.
Many people have been asking how they can help out with the Maddie's House project. Some of the old "Partners" have sent donations. Some are trying to get a "team" together again. Any donations would be great. You all have been so generous with donations in the past, we really felt uncomfortable asking again. But, since people are asking, any donations for Maddie's House would be great! Thank you.
Jane/Jeff Trimper
3159 W Stanton Rd
Stanton MI 48888
“Maddie’s House”
We are also having a float at Stanton’s Old Fashion Day’s Parade August 11. We will have a booth and selling Maddie’s House t-shirts. Then in November, we are planning a “redneck prom”. This should be interesting. Does anyone have connections with Jeff Foxworthy?
Hope you’re having a good summer. Going too fast!
Jeff
Hello.
I thought I'd give a quick update on the summer and the boys. It's been a very busy summer, between doctors, Duke, therapy... It's going too fast.
We had our second MLD yard sale. It was another successful event. This year's profits will go towards "Maddie's House". This is a project we are working on with the city of Stanton. We are trying to raise money for a unique playground/park downtown Stanton in memory of Maddie. We're about half way to our goal ($) and still working things out with the city. Below is a link to the company we are working with. Pretty exciting.
http://www.danielswoodland.com/
The boys have been to many doctors appointment this summer. We have to fit everything in before school starts. Max has another new wheelchair (manual). We are working with him on his electric chair. He's getting better. We went to Duke over the 4th of July. It was great to see all our friends in North Carolina, but very hard to be there with all the memories. All the test came out good. The boys did a great job and we're so proud of them on how they handle all the different test, running around and waiting. It was great to see and talk to Dr. Kurtzberg, Sue and Dr. Escolar. We also heard some good news with things going on in research and testing for myelin repair.
Just to let you know, my dad is doing pretty darn good. He’s not getting strong enough, fast enough for him, but that’s Dad. My mom is hanging in there. She’s been a tough gal through all of this. They go back to Mayo in August for testing. I’m sure we’ll hear good news.
That’s about it. Summer continues with therapy, doctors and some fun in between. Have a good summer.
Jeff
Monday, July 16, 2007 8:35 PM CDT
Hello.
I thought I'd give a quick update on the summer and the boys. It's been a very busy summer, between doctors, Duke, therapy... It's going too fast.
We had our second MLD yard sale. It was another successful event. This year's profits will go towards "Maddie's House". This is a project we are working on with the city of Stanton. We are trying to raise money for a unique playground/park downtown Stanton in memory of Maddie. We're about half way to our goal ($) and still working things out with the city. Below is a link to the company we are working with. Pretty exciting.
http://www.danielswoodland.com/
The boys have been to many doctors appointment this summer. We have to fit everything in before school starts. Max has another new wheelchair (manual). We are working with him on his electric chair. He's getting better. We went to Duke over the 4th of July. It was great to see all our friends in North Carolina, but very hard to be there with all the memories. All the test came out good. The boys did a great job and we're so proud of them on how they handle all the different test, running around and waiting. It was great to see and talk to Dr. Kurtzberg, Sue and Dr. Escolar. We also heard some good news with things going on in research and testing for myelin repair.
Just to let you know, my dad is doing pretty darn good. He’s not getting strong enough, fast enough for him, but that’s Dad. My mom is hanging in there. She’s been a tough gal through all of this. They go back to Mayo in August for testing. I’m sure we’ll hear good news.
That’s about it. Summer continues with therapy, doctors and some fun in between. Have a good summer.
Jeff
Thursday June 14, 2007 7:55 PM CDT
Hello.
We are in the middle (treasures up to our heads) of planning our Second Annual “Kick MLD” Yard Sale for Thursday, June 21. If you’d like to help with a donation, you can contact us through email. Stop by and look at all the treasures! We are on the way on raising enough money for a playground in Stanton in memory of Maddie.
Sam turned 8 years old today. We are so thankful he’s with us and doing so great. Happy Birthday Sam!
Hello.
Well, we had another great “Kick MLD in the BOOTy” fundraiser. We haven’t had one in the spring before and were a little worried no one would come. But again, our community was generous and so supportive. I think Montcalm County has some of the best MLD kickers in the country.
We had lots of silent auction baskets, mini drawings, kids’ activities and entertainment. Sam’s highlight was the pie-throwing contest when he was able to hit his principal in the face with cream pie. Max’s favorite part was rolling around with Uncle Bill, who always provides a good time and lot of laughs.
There are so many people who worked so hard. We’d like to thank all the people who donated baskets and auction items. Thank you to all the people who helped set up, work and clean up. We’d like to thank Millard’s Furniture for donating the TV for the raffle and to Chemical Bank for showcasing the TV. (Congrats to John G. for winning it!) The Central Montcalm FFA set up a wonderful petting zoo and the FHA and NHA provided some wonderful helpers. Thanks to the Lion’s Club for taking care of the food. Thanks to Penny Barb, Cheryl and Joanne for planning the event. Thanks to Jamey for being our emcee.
We always say this will be the last fundraiser of this type, but due the success (thanks to the community) and we all have so much fun doing this, we’re already talking about next year. We’ll see. It would be easier to move on with our lives and try to put so much of this behind us, but we feel we won’t stop until there is a cure for MLD or to make the stem cell transplant a safer procedure. So, once again, thank you to everyone who is a part of our fight. We WILL “Kick MLD in the Butt”.
We are planning our Second Annual “Kick MLD” Yard Sale for Thursday, June 21. If you’d like to help with a donation, you can contact us through email. Stop by and look at all the treasures!
One of Max’s classmates caught me in the hall of school on Monday and asked me how it went. I told him it went well. He asked how much we made. I told him we did pretty well. He asked, “Did you make enough to cure MLD?” I told him we were working on it. He said, “Well, I sit by Max and I really want to see MLD cured. I hope you can make enough money. Open up those pockets, huh Mr. Trimper.”
Did you make enough to cure MLD?
It’s enough to take your breath away.
Jeff & Jane
Sunday, April 22, 2007 1:38 PM CDT
Dear Friends,
We are less than one week away from the fifth annual Trimper Children Benefit. This year’s theme is country using a ‘Kick MLD in the BOOTy’ motto.
It will be next Saturday, April 28th from 4:00-8:00 at the Upper Elementary School in Stanton.
Like in the past, there will be a silent auction and a mini raffle.
Some of the baskets for the silent auction include:
Candle Basket
Tiger/Mets tickets
(4) Piston Tickets from George Blaha (game of choice w/backstage passes)
FFA baskets
Fun in the Sun Basket
Summer Fun Basket
Fishing Charter
Multiple Hand-tied Fishing Flies
Crystal Lake Dinner Cruise
Painted autumn scene
There will be a lot of fun activities for kids. We will have face painting, nail painting, slime making, and a cake walk. We will also be having a pie throwing contest thanks to six local good sports.
There will also be a cow patty raffle for a 42 inch Toshiba HDTV from Millard’s Furniture. Squares will be $20 a piece. If the animal plops its calling card in your square, you are the winner. We will sell up to 100 tickets. Tickets will be on sale starting tomorrow. Let us know if you’d like one.
Money raised will be going to research at Duke and also to a community memorial project in Maddie’s name.
Say a little prayer that people have a great time and that the money raised can do some good.
Thanks for your continued support.
Jane and Jeff
Sunday, March 25, 2007 8:29 PM CDT
Hello. Just wanted to update you all that still visit on a few of things. First, The "FIFTH annual Kick MLD in the Butt Fundraiser" will be Saturday, April 28th at 4 pm. Second, the SECOND annual "Kick MLD in the Butt Yard Sale" will be in mid June (Thursday, June 14?). So save those treasures if you'd like to help out. Third, we went to Charlevoix to visit with Mom and Dad today. It sure was great to see them at their home and Dad looking so good. It was good for all of us to spend some time with each other and share some laughs. They're getting ready to head back to Mayo for Dad's stem cell transplant. FOUR in one family! Not the kind of record you want to hold. They are both upbeat and ready to get going. Keep them in your thoughts. Spring is here! Jeff
Dad's website:
www.caringbridge.org/visit/doctrimper
Dear Friends,
It is a sunny Michigan day and the snow is melting. Spring is hopefully around the corner. We feel like we have been hibernating all winter and hope the warmer weather gets us out more.
Jeff’s dad, who has been at Mayo being treated for Burkitt’s lymphoma, is now home for a month. It was a long stretch at Mayo for both Jeff’s mom and dad. They were there for 5 months. Thankfully, the cancer is gone. They will however go back in April for a stem cell transplant. He will receive his own cells and hopefully this will be the final treatment for the Burkitt’s. Can you believe there is another stem cell transplant for the Trimper family??
They have a Caringbridge site set up for Don. It is www.caringbridge.org/visit/doctrimper.
The boys are doing well. Max’s IEP was a couple of weeks ago. Everyone agreed he was having a great year and learning lots. Sam is loving first grade and has many friends.
Not much has changed for Max physically. He hasn’t needed Botox since June. He is having more trouble sitting upright. But he has also gotten much longer in the last year.
Sam is still wearing daytime orthodics. He also has a night brace for his right foot. He just started basketball.
On Saturday, April 28th, there will be another benefit/silent auction. Our friend Penny is working hard at putting it all together. We will give more details soon. The money raised will hopefully go to creating a playground in Stanton in memory of Maddie. We have contacted some local committee members and will see what happens.
We are also planning our second annual "Kick MLD Yard Sale". We are planning on Thursday, June 14 or the next Thursday, June 21. So, save those "treasures" if you'd like to help out.
We continue to plug along day by day. Each day is such a surprise. It surprises me how okay I am. And it surprises me how bad it still hurts. Great loss is hard. And it can only be felt not explained. You can’t have a daughter like Maddie and not miss her every second when she is gone. It’s the price of loving her.
Spring break is around the corner. We are going to head to a beach in Florida. Hopefully the boys will have a wonderful time.
Love,
Jeff and Jane
Sunday, March 11, 2007 2:49 PM CDT
Dear Friends,
It is a sunny Michigan day and the snow is melting. Spring is hopefully around the corner. We feel like we have been hibernating all winter and hope the warmer weather gets us out more.
Jeff’s dad, who has been at Mayo being treated for Burkitt’s lymphoma, is now home for a month. It was a long stretch at Mayo for both Jeff’s mom and dad. They were there for 5 months. Thankfully, the cancer is gone. They will however go back in April for a stem cell transplant. He will receive his own cells and hopefully this will be the final treatment for the Burkitt’s. Can you believe there is another stem cell transplant for the Trimper family??
They have a Caringbridge site set up for Don. It is www.caringbridge.org/visit/doctrimper.
The boys are doing well. Max’s IEP was a couple of weeks ago. Everyone agreed he was having a great year and learning lots. Sam is loving first grade and has many friends.
Not much has changed for Max physically. He hasn’t needed Botox since June. He is having more trouble sitting upright. But he has also gotten much longer in the last year.
Sam is still wearing daytime orthodics. He also has a night brace for his right foot. He just started basketball.
On Saturday, April 28th, there will be another benefit/silent auction. Our friend Penny is working hard at putting it all together. We will give more details soon. The money raised will hopefully go to creating a playground in Stanton in memory of Maddie. We have contacted some local committee members and will see what happens.
We are also planning our second annual "Kick MLD Yard Sale". We are planning on Thursday, June 14 or the next Thursday, June 21. So, save those "treasures" if you'd like to help out.
We continue to plug along day by day. Each day is such a surprise. It surprises me how okay I am. And it surprises me how bad it still hurts. Great loss is hard. And it can only be felt not explained. You can’t have a daughter like Maddie and not miss her every second when she is gone. It’s the price of loving her.
Spring break is around the corner. We are going to head to a beach in Florida. Hopefully the boys will have a wonderful time.
Love,
Jeff and Jane
Tuesday, January 16, 2007 5:59 PM CST
Hello.
Four years ago Max had is stem cell transplant in Minnesota. We had a nice little celebration for Max tonight. What can I say, we’re all so proud of him. Happy Four-Year Anniversary Max!
Tomorrow we will celebrate Maddie’s Birthday. We’re so proud of you also! Happy Birthday Maddie!
Jeff
Sunday, September 24, 2006 2:19 PM CDT
Dear Friends,
We’ve had a busy a September. The boys have done well getting back into the groove of school. Max has looked very bright eyed. He has a new para-professional working with him. She is great and Max seems so happy. He does go to regular public school here in Stanton. He is in a fifth grade classroom and a special education classroom. Both of his teachers are wonderful.
Sam has started first grade and is very happy. His day revolves around friends instead of learning though. In typical seven-year old boy fashion, his favorite parts of the day are recess and gym. He loves his teacher and I know he will have a good year.
Jeff and I are teaching. Jeff is in a fourth grade classroom at Max’s school. I am doing Title reading in both Max’s school and Sam’s. It gets a little crazy balancing work, motherhood, appointments, therapy, etc.
On the outside I look to be doing quite well since Maddie’s death. I smile, talk, and laugh. On the inside, I am a bit of a mess. I know that might be hard for friends and family to know, although I think to some degree, they probably feel the same way.
My decision-making skills are shaky. I have said and done many things this past year that were goofy People have been very forgiving and understanding. For many reasons, I worry about hitting the one-year anniversary of Maddie’s death. One of those is that I think people will feel like the worst of our grieving is over and we should be getting better. But I don’t feel like there is a time line for this. I hope they can continue to be forgiving as I continue to mess up.
We have kept a very tight circle of people around us. Except for some very close friends and family, we stick close to each other and spend a lot of time at home. Each season brings back memories and some heartache of its own.
My relationship with God is a little bit of a mystery to me. I don’t pray very often. A friend told me it sounded like I was giving God the cold shoulder. But I really don’t believe I am. I love God. I don’t feel anger toward him. I guess maybe I think of praying as very hard to do because I can’t have the one thing that I most need. He already told me no. It’s the same reason it’s hard for me to oblige Sam with a wish on the many times he asks me to when he sees a star, throws a penny in the fountain, or shows me a birthday cake.
When we were going to Ele’s place, the children’s grief center in Lansing, Jeff and I would go with the parents and have a group talk. One day a lady looked at me as we were sharing our story and said how grateful I must be that Max and Sam are alright. I was at a loss for words. As thankful as I am that they are alive and stable, it is really hard to be thankful that only one of my children has died. It is hard to be thankful that only one of my children is in a wheelchair. I never lose sight of all we could have lost, but I also can’t forget all we had.
Although I understand the path I need to walk, I never signed up for it. Although I succumb to God’s will, I certainly didn’t plan for life to be like this. I do think we have handled a devastating situation pretty well.
I guess I think God has given me a bit of a reprieve. I think He’s waiting for me, knowing I am still here but quietly processing the hurt and sadness. Just as I know He is always waiting for me and is also quiet Himself at times.
I feel like the CaringBridge page is a bit like an bad boyfriend. I’ve broken up with it, but somehow we keep getting back together. As much as this is a lovely relationship, it is also not always a healthy one. Jeff may have some interest in updating pictures and writing in the future. I’ll let him decide. But for me, this will most likely be my last entry. Although, who knows? I told you my decision making was shaky.
We aren’t sure what the future will hold but we will continue to take it one day at a time.
Love,
Jane
Friday, December 1, 2006 10:02 AM CST
Hello.
I just wanted to write a quick note about my dad. He is still at Mayo. Things are looking pretty good. He has a long way to go, but he's getting stronger each week. He has three more rounds of chemotherapy. They think the cancer is gone, but being very cautious. My mom is hanging in there. We're all very proud of her how she has handles this whole "experience". We hope to get them home soon.
The boys are having a great year. They both have wonderful teachers and Max has another great aide with him this year.
Jeff
*New pictures.
Wednesday, October 11, 2006 10:48 AM CDT
Dear Friends,
For those of you who know Jeff’s parents, Don is at Mayo right now. He is currently in the ICU with complications with lymphoma. This has all happened suddenly and just seems to keep getting worse.
We don’t want to invade their privacy, but I see some people have already posted their situation in the guestbook.
It is a tough time for everyone. For those prayer warriors out there, please say a prayer for Don, Marcia and all the kids.
Thanks.
Jane
Sunday, September 24, 2006 2:19 PM CDT
Dear Friends,
We’ve had a busy a September. The boys have done well getting back into the groove of school. Max has looked very bright eyed. He has a new para-professional working with him. She is great and Max seems so happy. He does go to regular public school here in Stanton. He is in a fifth grade classroom and a special education classroom. Both of his teachers are wonderful.
Sam has started first grade and is very happy. His day revolves around friends instead of learning though. In typical seven-year old boy fashion, his favorite parts of the day are recess and gym. He loves his teacher and I know he will have a good year.
Jeff and I are teaching. Jeff is in a fourth grade classroom at Max’s school. I am doing Title reading in both Max’s school and Sam’s. It gets a little crazy balancing work, motherhood, appointments, therapy, etc.
On the outside I look to be doing quite well since Maddie’s death. I smile, talk, and laugh. On the inside, I am a bit of a mess. I know that might be hard for friends and family to know, although I think to some degree, they probably feel the same way.
My decision-making skills are shaky. I have said and done many things this past year that were goofy People have been very forgiving and understanding. For many reasons, I worry about hitting the one-year anniversary of Maddie’s death. One of those is that I think people will feel like the worst of our grieving is over and we should be getting better. But I don’t feel like there is a time line for this. I hope they can continue to be forgiving as I continue to mess up.
We have kept a very tight circle of people around us. Except for some very close friends and family, we stick close to each other and spend a lot of time at home. Each season brings back memories and some heartache of its own.
My relationship with God is a little bit of a mystery to me. I don’t pray very often. A friend told me it sounded like I was giving God the cold shoulder. But I really don’t believe I am. I love God. I don’t feel anger toward him. I guess maybe I think of praying as very hard to do because I can’t have the one thing that I most need. He already told me no. It’s the same reason it’s hard for me to oblige Sam with a wish on the many times he asks me to when he sees a star, throws a penny in the fountain, or shows me a birthday cake.
When we were going to Ele’s place, the children’s grief center in Lansing, Jeff and I would go with the parents and have a group talk. One day a lady looked at me as we were sharing our story and said how grateful I must be that Max and Sam are alright. I was at a loss for words. As thankful as I am that they are alive and stable, it is really hard to be thankful that only one of my children has died. It is hard to be thankful that only one of my children is in a wheelchair. I never lose sight of all we could have lost, but I also can’t forget all we had.
Although I understand the path I need to walk, I never signed up for it. Although I succumb to God’s will, I certainly didn’t plan for life to be like this. I do think we have handled a devastating situation pretty well.
I guess I think God has given me a bit of a reprieve. I think He’s waiting for me, knowing I am still here but quietly processing the hurt and sadness. Just as I know He is always waiting for me and is also quiet Himself at times.
I feel like the CaringBridge page is a bit like an bad boyfriend. I’ve broken up with it, but somehow we keep getting back together. As much as this is a lovely relationship, it is also not always a healthy one. Jeff may have some interest in updating pictures and writing in the future. I’ll let him decide. But for me, this will most likely be my last entry. Although, who knows? I told you my decision making was shaky.
We aren’t sure what the future will hold but we will continue to take it one day at a time.
Love,
Jane
Wednesday, October 11, 2006 10:48 AM CDT
Dear Friends,
For those of you who know Jeff’s parents, Don is at Mayo right now. He is currently in the ICU with complications with lymphoma. This has all happened suddenly and just seems to keep getting worse.
We don’t want to invade their privacy, but I see some people have already posted their situation in the guestbook.
It is a tough time for everyone. For those prayer warriors out there, please say a prayer for Don, Marcia and all the kids.
Thanks.
Jane
Sunday, September 24, 2006 2:19 PM CDT
Dear Friends,
We’ve had a busy a September. The boys have done well getting back into the groove of school. Max has looked very bright eyed. He has a new para-professional working with him. She is great and Max seems so happy. He does go to regular public school here in Stanton. He is in a fifth grade classroom and a special education classroom. Both of his teachers are wonderful.
Sam has started first grade and is very happy. His day revolves around friends instead of learning though. In typical seven-year old boy fashion, his favorite parts of the day are recess and gym. He loves his teacher and I know he will have a good year.
Jeff and I are teaching. Jeff is in a fourth grade classroom at Max’s school. I am doing Title reading in both Max’s school and Sam’s. It gets a little crazy balancing work, motherhood, appointments, therapy, etc.
On the outside I look to be doing quite well since Maddie’s death. I smile, talk, and laugh. On the inside, I am a bit of a mess. I know that might be hard for friends and family to know, although I think to some degree, they probably feel the same way.
My decision-making skills are shaky. I have said and done many things this past year that were goofy People have been very forgiving and understanding. For many reasons, I worry about hitting the one-year anniversary of Maddie’s death. One of those is that I think people will feel like the worst of our grieving is over and we should be getting better. But I don’t feel like there is a time line for this. I hope they can continue to be forgiving as I continue to mess up.
We have kept a very tight circle of people around us. Except for some very close friends and family, we stick close to each other and spend a lot of time at home. Each season brings back memories and some heartache of its own.
My relationship with God is a little bit of a mystery to me. I don’t pray very often. A friend told me it sounded like I was giving God the cold shoulder. But I really don’t believe I am. I love God. I don’t feel anger toward him. I guess maybe I think of praying as very hard to do because I can’t have the one thing that I most need. He already told me no. It’s the same reason it’s hard for me to oblige Sam with a wish on the many times he asks me to when he sees a star, throws a penny in the fountain, or shows me a birthday cake.
When we were going to Ele’s place, the children’s grief center in Lansing, Jeff and I would go with the parents and have a group talk. One day a lady looked at me as we were sharing our story and said how grateful I must be that Max and Sam are alright. I was at a loss for words. As thankful as I am that they are alive and stable, it is really hard to be thankful that only one of my children has died. It is hard to be thankful that only one of my children is in a wheelchair. I never lose sight of all we could have lost, but I also can’t forget all we had.
Although I understand the path I need to walk, I never signed up for it. Although I succumb to God’s will, I certainly didn’t plan for life to be like this. I do think we have handled a devastating situation pretty well.
I guess I think God has given me a bit of a reprieve. I think He’s waiting for me, knowing I am still here but quietly processing the hurt and sadness. Just as I know He is always waiting for me and is also quiet Himself at times.
I feel like the CaringBridge page is a bit like an bad boyfriend. I’ve broken up with it, but somehow we keep getting back together. As much as this is a lovely relationship, it is also not always a healthy one. Jeff may have some interest in updating pictures and writing in the future. I’ll let him decide. But for me, this will most likely be my last entry. Although, who knows? I told you my decision making was shaky.
We aren’t sure what the future will hold but we will continue to take it one day at a time.
Love,
Jane
Sunday, September 24, 2006 2:19 PM CDT
Dear Friends,
We’ve had a busy a September. The boys have done well getting back into the groove of school. Max has looked very bright eyed. He has a new para-professional working with him. She is great and Max seems so happy. He does go to regular public school here in Stanton. He is in a fifth grade classroom and a special education classroom. Both of his teachers are wonderful.
Sam has started first grade and is very happy. His day revolves around friends instead of learning though. In typical seven-year old boy fashion, his favorite parts of the day are recess and gym. He loves his teacher and I know he will have a good year.
Jeff and I are teaching. Jeff is in a fourth grade classroom at Max’s school. I am doing Title reading in both Max’s school and Sam’s. It gets a little crazy balancing work, motherhood, appointments, therapy, etc.
On the outside I look to be doing quite well since Maddie’s death. I smile, talk, and laugh. On the inside, I am a bit of a mess. I know that might be hard for friends and family to know, although I think to some degree, they probably feel the same way.
My decision-making skills are shaky. I have said and done many things this past year that were goofy People have been very forgiving and understanding. For many reasons, I worry about hitting the one-year anniversary of Maddie’s death. One of those is that I think people will feel like the worst of our grieving is over and we should be getting better. But I don’t feel like there is a time line for this. I hope they can continue to be forgiving as I continue to mess up.
We have kept a very tight circle of people around us. Except for some very close friends and family, we stick close to each other and spend a lot of time at home. Each season brings back memories and some heartache of its own.
My relationship with God is a little bit of a mystery to me. I don’t pray very often. A friend told me it sounded like I was giving God the cold shoulder. But I really don’t believe I am. I love God. I don’t feel anger toward him. I guess maybe I think of praying as very hard to do because I can’t have the one thing that I most need. He already told me no. It’s the same reason it’s hard for me to oblige Sam with a wish on the many times he asks me to when he sees a star, throws a penny in the fountain, or shows me a birthday cake.
When we were going to Ele’s place, the children’s grief center in Lansing, Jeff and I would go with the parents and have a group talk. One day a lady looked at me as we were sharing our story and said how grateful I must be that Max and Sam are alright. I was at a loss for words. As thankful as I am that they are alive and stable, it is really hard to be thankful that only one of my children has died. It is hard to be thankful that only one of my children is in a wheelchair. I never lose sight of all we could have lost, but I also can’t forget all we had.
Although I understand the path I need to walk, I never signed up for it. Although I succumb to God’s will, I certainly didn’t plan for life to be like this. I do think we have handled a devastating situation pretty well.
I guess I think God has given me a bit of a reprieve. I think He’s waiting for me, knowing I am still here but quietly processing the hurt and sadness. Just as I know He is always waiting for me and is also quiet Himself at times.
I feel like the CaringBridge page is a bit like an bad boyfriend. I’ve broken up with it, but somehow we keep getting back together. As much as this is a lovely relationship, it is also not always a healthy one. Jeff may have some interest in updating pictures and writing in the future. I’ll let him decide. But for me, this will most likely be my last entry. Although, who knows? I told you my decision making was shaky.
We aren’t sure what the future will hold but we will continue to take it one day at a time.
Love,
Jane
Friday, August 25, 2006 9:45 AM CDT
Dear Friends,
I thought I would give a quick end of the summer update.
We continue to be very busy with therapies, appointments and small adventures. We took six days off from everything and did some day trips with the boys. We went to the zoo, the movies and Mackinac Island. Then we were back to business.
We had a team meeting yesterday with all our therapists and one of Max’s teachers. It was very productive. We are looking into getting Max a motorized wheelchair and an augmentative device. The push is to make him as independent as possible. But it sure takes a lot of effort to get equipment.
Sam is now in orthodics (braces on his legs). Because of his new foot position (that was what we were worried about last April when we made that emergency trip to Durham), he isn’t using certain muscles. His new braces put his feet back into proper position. I was very worried about how he would move in them and how much complaining he would do. The outcome has been great though. He wears them for several hours without complaining. And he moves so well in them. He runs better, jumps better, and walks with great form.
Dr. Kurtzberg emailed us last week. We are very happy to report that Michigan will now have a cord blood bank. It will be in Oakwood and I am hoping this will make it easier to donate the cord blood that we now just dispose of.
Jeff and I went to an MLD conference in July. There are some new things happening. We pray they lead to something. We look forward to one day having a cure for all and a way to repair the damage that has already been done.
Maddie is always on our mind. Her absence is huge in all things we do. We took the boys to Ele’s Place this summer. It is a children’s grief center in Lansing. Their program combines discussion with play and is very well done. Both boys had a good time.
We are plugging along. Life has taken some major turns and we can’t help but remember how easy it used to be for us before MLD. Right now it just hurts to remember.
I'll try to get Jeff to post some new pictures. But doesn't Max look great in his gait trainer??
Love,
Jane
Sunday, July 23, 2006 11:53 AM CDT
Dear Friends,
The four of us have spent the summer ‘hibernating’. We stay at home, do therapy, spend time with friends and get by day to day. Jeff updated the pictures of some things we have been up to.
With that said, it is going to be very unusual for me to put myself out there politically. But this latest issue, is too much for me to ignore. I find it very disheartening. I’m going to post a recent article by Mitch Albom. If only I were so eloquent….
I hope you are all having a peaceful summer.
Love,
Jane
MITCH ALBOM: Bush's stem cell veto: Whom does it save?
BY MITCH ALBOM
FREE PRESS COLUMNIST
July 23, 2006
Consider this scenario: Many years from now, some great-granddaughter of President George W. Bush is crippled in a car accident. There are treatments available that will heal her wounded spinal cord. But the doctor shakes his head and says, "I'm sorry, your great-grandfather didn't support our research, so we're not going to help you."
That would be cruel, right? Turning your back on someone in need?
No crueler than what Bush did last week.
There are people dying in this country from conditions that might be cured through embryonic stem cell research. Their children may be prone to similar afflictions.
Yet with a staged backdrop that was as hypocritical as it was arrogant, Bush used the first veto of his presidency to put a kibosh on funding more stem cell research. This, despite 63 yes votes in the Senate and 70 f Americans being in favor of it.
In a presidency already peppered with questionable decisions, this may go down as the most stubborn and selfish of them all.
Now, put down your pens if you're going to write me about abortion, because you'll be falling into the very trap that the president and his handlers set for you: to make you believe this is all about that issue. It is not.
Keep one thing in mind as we discuss this -- the embryos in question here are being thrown away. Disposed of. Tossed out. And thanks to this veto, they will continue to be. Bush never mentioned this once in his well-orchestrated event. But it's true.
Bill carefully constructed
The bill that Bush vetoed was painfully constructed to avoid abuse. It insisted that only extra, discarded embryos from fertility clinics -- and only when the donor of those embryos gave written approval and was not paid for them -- could be used for research.
Yet Bush made it seem as if scientists would be grabbing babies from mothers' wombs.
"This bill would support the taking of innocent human life ..." he said. "Each of these human embryos is a unique human life with inherent dignity and matchless value."
OK. If Bush's believes that, why isn't he closing down every fertility clinic in America right now? Almost any woman who goes in for fertility treatments ends up producing more embryos than are implanted. According to Dr. Sue O'Shea, the director of the Michigan Center for Human Embryonic Stem Cell Research, "per treatment, approximately 20 to 30 individual embryos get thrown away."
That's per woman, per treatment. If, as Bush insists, these embryos are little people, that's 20-30 murders per patient, right?
Where is the outrage?
Thousands of embryos available
Instead, with babies crying behind him, Bush ignored that question and proudly noted that embryos could be adopted, as some mothers in the room had done. So? How would this bill have stopped that? According to Sen. Arlen Specter and others, there have only been around 128 adoptions of such embryos in the last nine years. And since there are currently around 400,000 frozen embryos, clearly anyone who wants to adopt one can do so. That still leaves the unused ones to be thrown out.
And if you do that, you are surely showing them less respect than using them for potential cures for Alzheimer's, diabetes or ALS.
"Crossing this line would be a mistake," Bush said. But those are code words for what this is all about: making it look, sound and feel like the abortion debate. Yet, much as this pains people to hear, abortion is legal in America. So fetuses can be aborted but tiny cells about to be thrown out can't be used for research? We don't see the hypocrisy in that?
We're heard all the tired objections: We have enough stem cells. You can get them elsewhere. Scientists have negated these arguments. Even usual Bush-supporters such as Nancy Reagan and Bill Frist supported this bill. The research will go on -- despite Bush -- through private funding and in foreign countries. But it will be slower, and future patients who might be saved will die.
You wonder if one of those future patients will be one of Bush's great-grandchildren. If so, I hope that person is given help. It would be a kinder fate than what great-granddaddy just delivered to others.
Copyright © 2006 Detroit Free Press Inc.
Wednesday, July 5, 2006 8:00 PM CDT
Hello.
We made it back home late Monday night. We had a long week at Duke. Things are too busy there. Max's MRI and nerve conduction tests are the same as last time. They checked his sinuses and hips. Those were fine too. Sam didn't have as many tests as Max, but all of his came out stable. The only change we made was to increase Max's Keppra. They are also recommending some new equipment for Max. It was good to see Dr. Kurtzberg and Sue. Once again, it was hard seeing many of Maddie’s friends from clinic. We left Duke Friday morning.
We made a short stop at Hershey’s Chocolate World. It was crazy, but the boys enjoyed it. We spent a couple of days in Albany with our new niece Morgan. It was good to see Carl, Cindy (and my parents) and the new little baby. It was a nice two days there. We stopped off at Niagara Falls on the way home. Mistake. TOO many people.
So, all in all, it was a successful journey. We’re ready to just hang out at home and relax.
Have a good summer.
Jeff
Monday, June 26, 2006 7:19 PM CDT
Hello.
We made it to Durham. We’re back for the boys’ annual check-up. It took us two long days to get here. It’s hard on Max to sit for that long. We moved him around more today and he seemed to be doing better. Just takes a lot out of him. It should be a busy week. We’ll have tests all week and then meet with Dr. Kurtzberg on Thursday. We’ll have a lot to talk about. Many questions about the boys, the research, the human trials, what’s next… We try not to take up much of her time, but we have so many questions.
Being back here brings back good and tough memories. It’s a strange/hard feeling we can’t explain. I guess “heartbreak” comes to mind. We’ve been down here so many times for Maddie. So there are so many hotels, apartments, stores, roads… that remind us of her. I’m sure we’ll see many nurses, docs and friends that will take us back to Maddie. Needless to say, it’s extremely hard. We try to make the best of it for the boys. We talk about Maddie, but don’t overdue it. A delicate balance. As usual we pray that all the tests on the boys will come back positive. There is always a worry in the back of the head that something will come up, but I’m sure things will be great for them.
We hope to head out on Friday. We’re heading up the east coast to Albany, New York to see my sister Cindy, Carl and their new baby, Morgan Madeline Blanchard. We’re very excited to see them and the Baby. They seem to be doing very well. Then we’ll head home. We don’t have many plans for the summer. Swimming, therapy and spending time with friends. Sounds like a good summer. We will be flying back to Duke for an MLD conference in late July. We hope to hear many encouraging things about where the research is for MLD.
Have a good summer.
Jeff
Thursday, June 15, 2006 8:40 PM CDT
Hello,
Well, what can we say, another great fundraiser in the town of Stanton, Michigan (Montcalm County). Great donations, great shoppers, and most of all, great helpers!
We went beyond our expectations, and all the money is going to help many kids for many years. It's always emotional when we're dealing with MLD, remembering Maddie, and thinking about Max and Sam... But, we made it. We’re all tired. More details later. Thanks to all of you who helped and donated!
Jeff
Monday, June 5, 2006 6:14 PM CDT
New pictures of Sam and Max.
Things are starting to heat up for the Kick MLD Yard Sale. Think "good weather". We're just plugging away trying to finish out the school year. Three more days!
Jeff
Dear Friends,
Happy Mother’s Day. Thanks for the well wishes. Today was bittersweet. But truthfully, so was yesterday and the day before that and the day before that, etc. Every day has its challenges.
For the most part, not much is new here. Max and Sam are busy with school, horseback riding and therapies. Sam will start T-ball on Monday. We will probably start going to Ele’s Place this summer. It is a place created for children who have lost someone. I think it will be good for the boys.
There will be a Let’s Kick MLD in the Butt yard sale on June 15th. It is going to be at our house. If you’d like to donate anything, just let us know. We have been collecting quite an assortment of bikes, toys, and furniture. We also have a boat motor, a John Deere tractor, and a boat and trailer. It should be a fun day. Link below for more information.
The money will be used to help Dr. Kurtzberg fund her research. She is very close to human trials. The fellows that you have been funding the past two years have completed very important research in regards to making this happen. After the yard sale, we will send Dr. Kurtzberg another $25,000. In total you MLD supporters have helped raise $250,000 all of which was sent to Duke and UNC to fund this research. I can assure you that this money has made an enormous difference.
I find that incredibly humbling.
I believe Max’s future holds new treatments for myelin repair. I believe we will see a new and improved treatment for all people with MLD in the near future. I think that honors what the boys and especially Maddie had to endure. Not to forget the many others we have met and in some cases lost along the way.
I hope today was full of family and peace for you.
Love,
Jane
Sunday, May 14, 2006 1:31 PM CDT
New pictures of Sam and Max.
Things are starting to heat up for the Kick MLD Yard Sale. Think "good weather". We're just plugging away trying to finish out the school year. Three more days!
Jeff
Dear Friends,
Happy Mother’s Day. Thanks for the well wishes. Today was bittersweet. But truthfully, so was yesterday and the day before that and the day before that, etc. Every day has its challenges.
For the most part, not much is new here. Max and Sam are busy with school, horseback riding and therapies. Sam will start T-ball on Monday. We will probably start going to Ele’s Place this summer. It is a place created for children who have lost someone. I think it will be good for the boys.
There will be a Let’s Kick MLD in the Butt yard sale on June 15th. It is going to be at our house. If you’d like to donate anything, just let us know. We have been collecting quite an assortment of bikes, toys, and furniture. We also have a boat motor, a John Deere tractor, and a boat and trailer. It should be a fun day. Link below for more information.
The money will be used to help Dr. Kurtzberg fund her research. She is very close to human trials. The fellows that you have been funding the past two years have completed very important research in regards to making this happen. After the yard sale, we will send Dr. Kurtzberg another $25,000. In total you MLD supporters have helped raise $250,000 all of which was sent to Duke and UNC to fund this research. I can assure you that this money has made an enormous difference.
I find that incredibly humbling.
I believe Max’s future holds new treatments for myelin repair. I believe we will see a new and improved treatment for all people with MLD in the near future. I think that honors what the boys and especially Maddie had to endure. Not to forget the many others we have met and in some cases lost along the way.
I hope today was full of family and peace for you.
Love,
Jane
Thursday, April 27, 2006 8:37 PM CDT
Hello.
A year ago today we were planning two separate journeys and starting to celebrate Max’s 10th birthday. We were very worried about Maddie at the time. Maddie and Jane were heading for Duke for some test. Max and I were heading for Cincinnati for a therapy evaluation. I guess I always BELIEVED that Maddie would come home healthy. It was just another issue we needed to deal with. I never figured, and still can’t grasp it, that this trip would be the, well, the beginning. We miss her so much this year as we plan for Max’s 11th birthday (April 29). We know she is smiling down on her brothers with great pride and joy. The boys smile with great pride and joy as we often talk about their sister. We miss her.
Jeff
Friday, April 21, 2006 6:14 AM CDT
Dear Friends,
We received the report from Dr. Escolar at the University of North Carolina. Sam was evaluated by the physical therapist that works there. She said that he remains stable. He continues to test at the same percentiles he has always tested at. They did recommend that Sam be looked at for orthodics. He may need some shoe inserts or some type of ankle support.
It is a good report.
We're just plugging away and taking each day as it comes.
Love,
Jane
Thursday, April 6, 2006 1:17 PM CDT
Dear Friends,
We are home. It feels good and seems like we were gone longer than we were. Today we are just relaxing and getting caught up on chores.
It was a good trip. I think we were all dreading it but we knew we would be glad we went when all was said and done.
Like I wrote on Tuesday, all Sam’s tests remained stable. We do need to hear what Dr. Escolar says from the developmental center we go to at UNC. She will have a good perspective and some new thoughts.
Sam is walking on the outsides of his feet. Because of the peripheral damage that was done before and during the first year of transplant, Sam will take more time to adjust to growth changes, new developmental skills. etc. In other words, you know how when kids grow and change, they can become awkward. That will be true and more so for Sam. At least that is what we have heard so far, but Dr. Escolar may see things differently. It may also be that the damage done will present itself differently as he develops.
I think the whole thing was a big eye opener that things are not ‘normal’ for either of the boys. It is a reminder that we are different. It was apparent even at the airport. Families were flying off for vacations. We were flying back to Duke.
With that said, we found great comfort there. There we aren’t so different. The other families can relate to us. We can’t explain the connection or the comfort we receive from each other. You really have to experience it to understand it. I also can’t explain how deeply I feel for the other kids. It was so good to see kids like Jack, Jake and Ashleigh. It was also heart breaking to find one of the teenagers who was transplanted at the same time as Sam and Maddie back in for a second transplant.
We saw so many good people. It was very nice, hard, emotional and necessary. We were able to see a lot of people who Maddie loved and who loved her back. Seeing Dr. Kurtzberg and Sue was a real blessing. While we were meeting with them, a young man came and gave something to Dr. Kurtzberg. As he was walking away toward the elevator, she told us she had transplanted him 15 years ago. I couldn’t take my eyes off him. It was a big reminder of the amazing things they do daily.
We were able to spend some time with other transplant families also. We were able to spend time with the Evanoskys and Gwins. We chatted for quite a while in the lobby of the clinic.
We live such a weird life. There are constantly conflicting things happening, the good and bad always entwined. You get so frustrated when first class passengers push right by you as you are trying to carry your 65 pound son to his seat. Then a complete stranger who is incredibly nice comes over to talk with you at the airport and tells you about her son who has the same wheelchair. She looks at your son, not with pity but great affection.
You know, it really is all in the look. Our trip brought us looks of pity but also looks full of love. There is a small distinction between the two but it makes all the difference. We will always be thankful to God for the wonderful people who have been brought into our lives.
Love,
Jane
Wednesday, April 5, 2006 7:20 AM CDT
Dear Friends,
I will write more later, but I just wanted to assured everyone that Sam’s nerve conduction tests and MRI have remained stable since this summer. That was good news.
We are at the hotel and will be flying home this afternoon. I’ll write more specific details later.
Thanks for the prayers and thoughts.
Jane
Wednesday, March 29, 2006 6:50 PM CST
Dear Friends,
Thanks for the prayers, thoughts and kind words. The weekend was a mess but we are becoming calmer with each day. Our therapists through Harbor Rehab have been doing a good job giving us ‘the year in review’ and understanding how Sam has improved.
We are watching him less and as we back off we are able to see the good things. We still have our moments of great worry but are able to keep panic at bay. We seem to have only two gears: normal and panic. The in-between is gone for a while. I am sure it is part of this grief we feel. It is hard to be so irrational when you know you are being so irrational.
The boys had a good time at horseback riding this week. They both did a good job. Max rides Sidney, the crazy wild pony and Sam rode Bill, a big ole slow horse this week. It is a really nice half hour.
Our friends have been great. I have had some phone calls that were priceless. I have learned so much from what others have done. I thank God for that.
Love,
Jane
Sunday, March 26, 2006 5:15 PM CST
Dear Friends,
I was really hoping we wouldn’t need to update. I was hoping life would ease into some sense of normalcy. But worry is always waiting in the wings for us.
Sam had an evaluation done at school for PT and OT services. We have been watching him for the past several weeks, wondering about his every movement. The report worried us. We emailed parts of it to Dr. Kurtzberg and she agreed that it was concerning.
We are going to take the boys to Duke for spring break the first week of April. Sam will have a nerve conduction test and an MRI. We pray these have stayed stable since last fall.
We are finding ourselves in panic mode. While grieving Maddie’s loss so greatly, we are unable to think rationally and are overpowered by worst-case scenarios.
We are scared to go to Duke. We are scared what they might tell us. On a good day, going back to Duke would fill us with anxiety. There are memories of Maddie everywhere and many wonderful people who cared for her and loved her. But under these circumstances, we are even more anxious.
Please pray for us. Please pray that we can find strength, courage, and a sense of peace. And please, God willing, pray that this is something simple.
Love,
Jane
Sunday, February 26, 2006 5:53 PM CST
Dear Friends,
As Jeff wrote earlier, the fundraiser was a wonderful event again this year. Our friends raised over $16,000. But beyond the financial success, it was just a fun event. We live in a community of awesome people.
We are sending a check for $25,000 to Dr. Kurtzberg at Duke. The foundation will be sending it on March 1st. This will provide the money needed for a quarter of the year for the research being done with myelin repair. We are excited that things are moving forward and pray that this work will help lots of people. This is all thanks to the people who have given money to the foundation. Thank you, so much.
We also received a letter from Dr. Escolar at UNC, where your support has funded a medical fellowship for the past two years.
“Dear Mr. And Mrs. Trimper,
Thank you so much for you generosity in funding the second year of the Trimpers’ Clinical Fellowship for Research in Lysosomal Storage Disorders. Thanks to your support, Dr. Holly Martin spent the past year of her Child Development and Behavioral Pediatrics clinical fellowship learning all the clinical aspects of evaluation children with lysosomal storage disorders. She participated at the Myelin Project meeting focusing on MLD and has completed the review of the transplantation, neurophysiological, and neurodevelopmental data of children with this disease who were evaluated at The University of North Carolina at Chapel Hill and Duke University Medical Center. Next year, Dr. Martin will write a manuscript summarizing the outcome of children with MLD transplanted with umbilical cord blood. In addition, she will write a proposal to the MLF Foundation to describe the natural history of late infantile MLD. This will include a longitudinal analysis of neuroimaging, neurophysiological and neurodevelopmental changes that occur as the disease progresses, This information will be used in the future to measure the benefits of newly developed treatments. Dr. Martin will also provide comprehensive, specialized care to the families enrolled in the study. At the end of her fellowship, Dr. Martin will be fully trained to understand all aspects of this disease and individually design research projects.
The funding of this fellowship has also increased the awareness of these disorders among trainees and faculty in other related disciplines including researchers at the Neurodevelomental Research Center at the University of North Carolina.
Dr. Maria Luisa Escolar”
It is a great letter but one part is wrong. She starts by thanking us for the generosity but really the thanks goes to you.
Exciting stuff is going on in North Carolina. It brings hope and possibility.
We are still hanging in there. Life is drastically different and each day brings its struggles. All four of us handle the grief differently. There is no rhyme or reason to the thoughts and emotion. We are wounded souls. And there is really nothing that can change that. Maddie has created a void that nothing can fill.
Taking care of the boys has become a semi-obsession. I hold them, smell them, look at them and worry constantly. I guess that is just being Mom.
Love,
Jane
Tuesday, February 14, 2006 9:00 AM CST
I just came across a video (Evanosky Family website:
http://home.comcast.net/~sevanosky/HelpLinks.html) from a documentary a company did last summer at Duke. Click on "Dr. Joanne Kurtzberg" link to see the video. WARNING: You'll see Maddie and Jane.
http://www.cordus.com/media.htm
There is some great video of other docs and celebs about cord blood. Take some time and watch some of the videos.
You'll also see some video of Jane on the links below at the website.
-Patients, Parents and Doctors Discuss
"Donating Cord Blood"
"Cord Blood Transplants "
Link below.
Once again the "Kick MLD' /"Turn Up the Heat on MLD" fundraiser was a big success. We'd like to thank everyone who was involved in the planning, setting up, donating of items, and to all the people who came to help us fight MLD. We're so lucky to live in this great community. Thank you.
Jeff and Jane
Dear Friends,
We are still holding on in our town of Stanton. Life became busier. Jeff and I are both back to work as teachers full time. Sam and Max are busy with school, therapeutic horse back riding, and life in general.
I was a little confused by why so many people were surprised we were not updating the journal regularly. It has come to my attention that many people think our boys are still terminal and battling MLD. I guess somewhere along the way we didn’t make ourselves clear. We are sorry for the confusion.
The reason we chose to transplant the kids is because the transplant will halt the disease progression of MLD. It doesn’t fix the damage that is done before transplant and is not considered a cure for that reason in symptomatic patients, like Max. But neither Max nor Sam is supposed to get worse from MLD. This is according to the latest medical information, we have.
So our life is returning to a new normal pace. We continue to fight and look for things to help Max regain skills and repair his brain. We are planning on Sam growing up and leading a normal life, although he may not be the starting quarterback. Or maybe he will.
Even writing this, I know people won’t believe me. I don’t entirely understand that. But that’s okay.
We are looking forward to the benefit in February. We have been in touch with Dr. Kurtzberg. She is hoping to start trials at the end of the year in a procedure that would maybe one day help Max. We have to believe that one day they will know how both repair the brains of leukodystrophy sufferers and find a cure for all which is easier that a stem cell transplant.
Love,
Jane
MLD Yard Sale
Check out the information on the
1st Annual Kick MLD in the Butt Yard Sale.
More information coming soon.(Link below)
Fellows
We have had many emails and questions about the fellows and if we are going to keep funding them. Yes, we are continuing to take Trimper Children Foundation donations. You can continue to donate with your team, individually, or company. Foundation information can be found on a link at the bottom. Dr. Kurtzberg has written the following information:
Dr. Beam has been growing and characterizing oligodendrocytes (cells that produce myelin) from donated umbilical cord blood. He has perfected methods to predictably isolate and grow sufficient quantities for human therapies after 2-4 weeks in culture in the laboratory. He has performed phentypic and RNA studies to prove that the cells generated in the laboratory are oligodendrocytes and not another type of cell. He has also developed and validated methods to upscale the growth and production of these cells to prepare for use of these cells in human clinical trials. Over the past 3 months, Dr. Beam has obtained and bred a supply of immunodeficient mice with a metabolic disease to be used to test the safety of infusing human oligodendrocytes in patients. These mice allow human cells to grow in their organs because of their immunodeficient state. In the mice, cells are infused in the blood, the spinal fluid and directly into the brain. Mice are studied with MRIs and biopsies at various times after injection so that we can determine the best site and cell dose for injection. These studies should be completed within the next 6 months. If the cells prove safe, human trials should begin in the 3rd or 4th quarter of 2006.
Dr. Maria.Escolar information:
"Since my training began in July 2004, I have endeavored upon a diverse range of clinical and research responsibilities. Through the NFRD clinic under the direction of Dr. Maria L. Escolar, I have had the opportunity to assess over 120 patients in more than 160 multidisciplinary evaluations. This includes children with Krabbe Disease, Metachromatic Leukodystrophy, Adrenoleukodystrophy, Hurler’s Syndrome, Hunter’s Syndrome, Sanfilippo, Niemann-Pick, Tay Sachs, PNP deficiency, Sandhoff, Morquio, Alpha mannisdosis, Osteopetrosis, and Mucolipidosis IV. In addition to seeing children with these disorders, I have had the opportunity to evaluate a number of children with various types of childhood cancers with learning or behavior difficulties.
In my first year of fellowship, I had the opportunity to participate in the Myelin Project meeting, which focused on MLD. This helped develop me focus my research interest on MLD. I am currently in the process of refining two manuscripts to submit for publication. One manuscript will summarize the outcome of children with MLD transplanted with umbilical cord blood. I am also working on a grant to investigate the natural history of late infantile MLD in a small group of patients. It will include a longitudinal analysis of neuroimaging, neurophysiological, and neurodevelopmental changes that occur as the disease progresses. I hope this information will be used in the future to measure the benefits of newly developed treatments".
Future research possibilities: These would directly help kids like Max, Emma, Lucas, Cory (too many to name. We would just leave someone out)…and many other MLD and leukodystrophy sufferers - not just those who have been able to have a transplant.
1. Fund another fellow for 1 or 2 more years. We are finally at the point where we can perform important experiments in mice and rats regarding delivery of oligos and other stem cells to the brain. Donald completes his fellowship the end of June 2006. It would be great to have another fellow to carry on these experiments with additional types of cells.
2. Fund the actual technical costs of the animal experiements, approx $25K/year. I tried to get a grant for this, but they want results of preliminary experiments first. Funding for 1 year would allow us to generate this data after which time, I should be able to get NIH funding.
More information is below and the links to our Trimper Children web site.
In memory of Madeline Britton Trimper
January 17, 1998-November 7, 2005
Thursday, February 9, 2006 4:03 PM CST
There have been some questions about the times on Saturday. The event is from 4:00 to 8:00 p.m.
The silent auction bidding and mini-drawings will both end at 6:00 p.m. (bidding is 4-6 pm).
As soon as possible, the winners of both events will start being announced. It will probably take until approximately 7:00 - 7:15 to finish that.
Immediately following will be the drawing of the hot tub "guessing jar" (The hot tub will be filled with balloons for people to guess how many balloons are in it.), and then the drawing for the winner of the hot tub raffle.
Hope to see you there.
Jeff
Dear Friends,
We are still holding on in our town of Stanton. Life became busier. Jeff and I are both back to work as teachers full time. Sam and Max are busy with school, therapeutic horse back riding, and life in general.
I was a little confused by why so many people were surprised we were not updating the journal regularly. It has come to my attention that many people think our boys are still terminal and battling MLD. I guess somewhere along the way we didn’t make ourselves clear. We are sorry for the confusion.
The reason we chose to transplant the kids is because the transplant will halt the disease progression of MLD. It doesn’t fix the damage that is done before transplant and is not considered a cure for that reason in symptomatic patients, like Max. But neither Max nor Sam is supposed to get worse from MLD. This is according to the latest medical information, we have.
So our life is returning to a new normal pace. We continue to fight and look for things to help Max regain skills and repair his brain. We are planning on Sam growing up and leading a normal life, although he may not be the starting quarterback. Or maybe he will.
Even writing this, I know people won’t believe me. I don’t entirely understand that. But that’s okay.
We are looking forward to the benefit in February. We have been in touch with Dr. Kurtzberg. She is hoping to start trials at the end of the year in a procedure that would maybe one day help Max. We have to believe that one day they will know how both repair the brains of leukodystrophy sufferers and find a cure for all which is easier that a stem cell transplant.
Love,
Jane
4th Annual Trimper Children Fundraiser
"Turn Up the Heat on MLD"
When: Saturday, February 11, 2006 4:00PM-8:00PM
Where: Central Montcalm Upper Elementary
Hawaiian Theme
-Hot Tub Raffle (Great Lakes Spas of Stanton)
-Silent Auctions
-Mini Drawings
-Food (Hawaiian)
-MLD Both
If you are interested in purchasing tickets for the hot tub, let Penny know the number of tickets you would like and the address you would like them sent and she will be happy to send them to you. Just fill out the stubs and return them with the appropriate amount of money.
Tickets are $5.00 each.
Write checks to: FCC WOMENS FELLOWSHIP/MLD.
We will also be selling at the CMPS home JV and Varsity basketball games. We will also be selling them the night of the fundraiser.
Penny Barber
PO 751
Stanton, MI 48888
barber6@charter.net
-Come have some fun, get warm and win some great prizes.
-Contact Penny or Barb on donating a theme basket and other information.
Penny Burlison
pburlison@cms.masid.com
989-352-7596
or
Barb Millard
bmillard@cms.maisd.com
989-365-3126
Help us with the fight against MLD!
www.trimperchildren.org/EventsSchedule.html
or
www.trimperchildren.org
(Links are below)
SECOND
Check out the information on the
1st Annual Kick MLD in the Butt Yard Sale.
More information coming soon.(Link below)
THIRD
We have had many emails and questions about the fellows and if we are going to keep funding them. Yes, we are continuing to take Trimper Children Foundation donations. You can continue to donate with your team, individually, or company. Foundation information can be found on a link at the bottom. Dr. Kurtzberg has written the following information:
Dr. Beam has been growing and characterizing oligodendrocytes (cells that produce myelin) from donated umbilical cord blood. He has perfected methods to predictably isolate and grow sufficient quantities for human therapies after 2-4 weeks in culture in the laboratory. He has performed phentypic and RNA studies to prove that the cells generated in the laboratory are oligodendrocytes and not another type of cell. He has also developed and validated methods to upscale the growth and production of these cells to prepare for use of these cells in human clinical trials. Over the past 3 months, Dr. Beam has obtained and bred a supply of immunodeficient mice with a metabolic disease to be used to test the safety of infusing human oligodendrocytes in patients. These mice allow human cells to grow in their organs because of their immunodeficient state. In the mice, cells are infused in the blood, the spinal fluid and directly into the brain. Mice are studied with MRIs and biopsies at various times after injection so that we can determine the best site and cell dose for injection. These studies should be completed within the next 6 months. If the cells prove safe, human trials should begin in the 3rd or 4th quarter of 2006.
Dr. Maria.Escolar information:
"Since my training began in July 2004, I have endeavored upon a diverse range of clinical and research responsibilities. Through the NFRD clinic under the direction of Dr. Maria L. Escolar, I have had the opportunity to assess over 120 patients in more than 160 multidisciplinary evaluations. This includes children with Krabbe Disease, Metachromatic Leukodystrophy, Adrenoleukodystrophy, Hurler’s Syndrome, Hunter’s Syndrome, Sanfilippo, Niemann-Pick, Tay Sachs, PNP deficiency, Sandhoff, Morquio, Alpha mannisdosis, Osteopetrosis, and Mucolipidosis IV. In addition to seeing children with these disorders, I have had the opportunity to evaluate a number of children with various types of childhood cancers with learning or behavior difficulties.
In my first year of fellowship, I had the opportunity to participate in the Myelin Project meeting, which focused on MLD. This helped develop me focus my research interest on MLD. I am currently in the process of refining two manuscripts to submit for publication. One manuscript will summarize the outcome of children with MLD transplanted with umbilical cord blood. I am also working on a grant to investigate the natural history of late infantile MLD in a small group of patients. It will include a longitudinal analysis of neuroimaging, neurophysiological, and neurodevelopmental changes that occur as the disease progresses. I hope this information will be used in the future to measure the benefits of newly developed treatments".
Future research possibilities: These would directly help kids like Max, Emma, Lucas, Cory (too many to name. We would just leave someone out)…and many other MLD and leukodystrophy sufferers - not just those who have been able to have a transplant.
1. Fund another fellow for 1 or 2 more years. We are finally at the point where we can perform important experiments in mice and rats regarding delivery of oligos and other stem cells to the brain. Donald completes his fellowship the end of June 2006. It would be great to have another fellow to carry on these experiments with additional types of cells.
2. Fund the actual technical costs of the animal experiements, approx $25K/year. I tried to get a grant for this, but they want results of preliminary experiments first. Funding for 1 year would allow us to generate this data after which time, I should be able to get NIH funding.
More information is below and the links to our Trimper Children web site.
In memory of Madeline Britton Trimper
January 17, 1998-November 7, 2005
Saturday, January 28, 2006 3:37 PM CST
Dear Friends,
We are still holding on in our town of Stanton. Life became busier. Jeff and I are both back to work as teachers full time. Sam and Max are busy with school, therapeutic horse back riding, and life in general.
I was a little confused by why so many people were surprised we were not updating the journal regularly. It has come to my attention that many people think our boys are still terminal and battling MLD. I guess somewhere along the way we didn’t make ourselves clear. We are sorry for the confusion.
The reason we chose to transplant the kids is because the transplant will halt the disease progression of MLD. It doesn’t fix the damage that is done before transplant and is not considered a cure for that reason in symptomatic patients, like Max. But neither Max nor Sam is supposed to get worse from MLD. This is according to the latest medical information, we have.
So our life is returning to a new normal pace. We continue to fight and look for things to help Max regain skills and repair his brain. We are planning on Sam growing up and leading a normal life, although he may not be the starting quarterback. Or maybe he will.
Even writing this, I know people won’t believe me. I don’t entirely understand that. But that’s okay.
We are looking forward to the benefit in February. We have been in touch with Dr. Kurtzberg. She is hoping to start trials at the end of the year in a procedure that would maybe one day help Max. We have to believe that one day they will know how both repair the brains of leukodystrophy sufferers and find a cure for all which is easier that a stem cell transplant.
Love,
Jane
4th Annual Trimper Children Fundraiser
"Turn Up the Heat on MLD"
When: Saturday, February 11, 2006 4:00PM-8:00PM
Where: Central Montcalm Upper Elementary
Hawaiian Theme
-Hot Tub Raffle (Great Lakes Spas of Stanton)
-Silent Auctions
-Mini Drawings
-Food (Hawaiian)
-MLD Both
If you are interested in purchasing tickets for the hot tub, let Penny know the number of tickets you would like and the address you would like them sent and she will be happy to send them to you. Just fill out the stubs and return them with the appropriate amount of money.
Tickets are $5.00 each.
Write checks to: FCC WOMENS FELLOWSHIP/MLD.
We will also be selling at the CMPS home JV and Varsity basketball games. We will also be selling them the night of the fundraiser.
Penny Barber
PO 751
Stanton, MI 48888
barber6@charter.net
-Come have some fun, get warm and win some great prizes.
-Contact Penny or Barb on donating a theme basket and other information.
Penny Burlison
pburlison@cms.masid.com
989-352-7596
or
Barb Millard
bmillard@cms.maisd.com
989-365-3126
Help us with the fight against MLD!
www.trimperchildren.org/EventsSchedule.html
or
www.trimperchildren.org
(Links are below)
SECOND
Check out the information on the
1st Annual Kick MLD in the Butt Yard Sale.
More information coming soon.(Link below)
THIRD
We have had many emails and questions about the fellows and if we are going to keep funding them. Yes, we are continuing to take Trimper Children Foundation donations. You can continue to donate with your team, individually, or company. Foundation information can be found on a link at the bottom. Dr. Kurtzberg has written the following information:
Dr. Beam has been growing and characterizing oligodendrocytes (cells that produce myelin) from donated umbilical cord blood. He has perfected methods to predictably isolate and grow sufficient quantities for human therapies after 2-4 weeks in culture in the laboratory. He has performed phentypic and RNA studies to prove that the cells generated in the laboratory are oligodendrocytes and not another type of cell. He has also developed and validated methods to upscale the growth and production of these cells to prepare for use of these cells in human clinical trials. Over the past 3 months, Dr. Beam has obtained and bred a supply of immunodeficient mice with a metabolic disease to be used to test the safety of infusing human oligodendrocytes in patients. These mice allow human cells to grow in their organs because of their immunodeficient state. In the mice, cells are infused in the blood, the spinal fluid and directly into the brain. Mice are studied with MRIs and biopsies at various times after injection so that we can determine the best site and cell dose for injection. These studies should be completed within the next 6 months. If the cells prove safe, human trials should begin in the 3rd or 4th quarter of 2006.
Dr. Maria.Escolar information:
"Since my training began in July 2004, I have endeavored upon a diverse range of clinical and research responsibilities. Through the NFRD clinic under the direction of Dr. Maria L. Escolar, I have had the opportunity to assess over 120 patients in more than 160 multidisciplinary evaluations. This includes children with Krabbe Disease, Metachromatic Leukodystrophy, Adrenoleukodystrophy, Hurler’s Syndrome, Hunter’s Syndrome, Sanfilippo, Niemann-Pick, Tay Sachs, PNP deficiency, Sandhoff, Morquio, Alpha mannisdosis, Osteopetrosis, and Mucolipidosis IV. In addition to seeing children with these disorders, I have had the opportunity to evaluate a number of children with various types of childhood cancers with learning or behavior difficulties.
In my first year of fellowship, I had the opportunity to participate in the Myelin Project meeting, which focused on MLD. This helped develop me focus my research interest on MLD. I am currently in the process of refining two manuscripts to submit for publication. One manuscript will summarize the outcome of children with MLD transplanted with umbilical cord blood. I am also working on a grant to investigate the natural history of late infantile MLD in a small group of patients. It will include a longitudinal analysis of neuroimaging, neurophysiological, and neurodevelopmental changes that occur as the disease progresses. I hope this information will be used in the future to measure the benefits of newly developed treatments".
Future research possibilities: These would directly help kids like Max, Emma, Lucas, Cory (too many to name. We would just leave someone out)…and many other MLD and leukodystrophy sufferers - not just those who have been able to have a transplant.
1. Fund another fellow for 1 or 2 more years. We are finally at the point where we can perform important experiments in mice and rats regarding delivery of oligos and other stem cells to the brain. Donald completes his fellowship the end of June 2006. It would be great to have another fellow to carry on these experiments with additional types of cells.
2. Fund the actual technical costs of the animal experiements, approx $25K/year. I tried to get a grant for this, but they want results of preliminary experiments first. Funding for 1 year would allow us to generate this data after which time, I should be able to get NIH funding.
More information is below and the links to our Trimper Children web site.
In memory of Madeline Britton Trimper
January 17, 1998-November 7, 2005
Monday, January 9, 2006 6:45 AM CST
Dear Friends,
I just wanted to let you all know we are holding on in Michigan.
Jeff started back to work full time last week. He is back in the middle school teaching a variety of elective classes. I started last Wednesday and will only be teaching three days a week until January 23rd, semester time. Then I will also be back to work full time. I will be working with children who need extra support, AKA ‘Title’.
The boys are doing fine. They miss their sister. Sam talks about her often. We share lots of stories about her with Max. He laughs a lot. They are really good boys.
We’ve been grieving privately and find home to be the safest spot. It will be hard to leave it everyday as we try to join the world. But it has to happen.
We are also trying to focus again on the fight against MLD. Our friends are putting on a benefit again in Stanton and Jeff and I are organizing an MLD community yard sale. There is a little of Maddie’s fighting spirit in all of us. We are also continuing to take Trimper Children Foundation donations. More information is below and the links to our Trimper Children web site. We are working on three things at this time.
FIRST
4th Annual Trimper Children Fundraiser
"Turn Up the Heat on MLD"
When: Saturday, February 11, 2006 4:00PM-8:00PM
Where: Central Montcalm Upper Elementary
Hawaiian Theme
-Hot Tub Raffle
-Silent Auctions
-Mini Drawings
-Food (Hawaiian)
-MLD Both
If you are interested in purchasing tickets for the hot tub, let Penny know the number of tickets you would like and the address you would like them sent and she will be happy to send them to you. Just fill out the stubs and return them with the appropriate amount of money.
Tickets are $5.00 each.
Write checks to: FCC WOMENS FELLOWSHIP/MLD.
We will also be selling at the CMPS home JV and Varsity basketball games. We will also be selling them the night of the fundraiser.
Penny Barber
PO 751
Stanton, MI 48888
barber6@charter.net
-Come have some fun, get warm and win some great prizes.
-Contact Penny or Barb on donating a theme basket and other information.
Penny Burlison
pburlison@cms.masid.com
989-352-7596
or
Barb Millard
bmillard@cms.maisd.com
989-365-3126
Help us with the fight against MLD!
www.trimperchildren.org/EventsSchedule.html
or
www.trimperchildren.org
(Links are below)
SECOND
Check out the information on the
1st Annual Kick MLD in the Butt Yard Sale.
More information coming soon.(Link below)
THIRD
We have had many emails and questions about the fellows and if we are going to keep funding them. Yes, we are continuing to take Trimper Children Foundation donations. You can continue to donate with your team, individually, or company. Foundation information can be found on a link at the bottom. Dr. Kurtzberg has written the following information:
Dr. Beam has been growing and characterizing oligodendrocytes (cells that produce myelin) from donated umbilical cord blood. He has perfected methods to predictably isolate and grow sufficient quantities for human therapies after 2-4 weeks in culture in the laboratory. He has performed phentypic and RNA studies to prove that the cells generated in the laboratory are oligodendrocytes and not another type of cell. He has also developed and validated methods to upscale the growth and production of these cells to prepare for use of these cells in human clinical trials. Over the past 3 months, Dr. Beam has obtained and bred a supply of immunodeficient mice with a metabolic disease to be used to test the safety of infusing human oligodendrocytes in patients. These mice allow human cells to grow in their organs because of their immunodeficient state. In the mice, cells are infused in the blood, the spinal fluid and directly into the brain. Mice are studied with MRIs and biopsies at various times after injection so that we can determine the best site and cell dose for injection. These studies should be completed within the next 6 months. If the cells prove safe, human trials should begin in the 3rd or 4th quarter of 2006.
Dr. Maria.Escolar information:
"Since my training began in July 2004, I have endeavored upon a diverse range of clinical and research responsibilities. Through the NFRD clinic under the direction of Dr. Maria L. Escolar, I have had the opportunity to assess over 120 patients in more than 160 multidisciplinary evaluations. This includes children with Krabbe Disease, Metachromatic Leukodystrophy, Adrenoleukodystrophy, Hurler’s Syndrome, Hunter’s Syndrome, Sanfilippo, Niemann-Pick, Tay Sachs, PNP deficiency, Sandhoff, Morquio, Alpha mannisdosis, Osteopetrosis, and Mucolipidosis IV. In addition to seeing children with these disorders, I have had the opportunity to evaluate a number of children with various types of childhood cancers with learning or behavior difficulties.
In my first year of fellowship, I had the opportunity to participate in the Myelin Project meeting, which focused on MLD. This helped develop me focus my research interest on MLD. I am currently in the process of refining two manuscripts to submit for publication. One manuscript will summarize the outcome of children with MLD transplanted with umbilical cord blood. I am also working on a grant to investigate the natural history of late infantile MLD in a small group of patients. It will include a longitudinal analysis of neuroimaging, neurophysiological, and neurodevelopmental changes that occur as the disease progresses. I hope this information will be used in the future to measure the benefits of newly developed treatments".
Future research possibilities: These would directly help kids like Max, Emma, Lucas, Cory (too many to name. We would just leave someone out)…and many other MLD and leukodystrophy sufferers - not just those who have been able to have a transplant.
1. Fund another fellow for 1 or 2 more years. We are finally at the point where we can perform important experiments in mice and rats regarding delivery of oligos and other stem cells to the brain. Donald completes his fellowship the end of June 2006. It would be great to have another fellow to carry on these experiments with additional types of cells.
2. Fund the actual technical costs of the animal experiements, approx $25K/year. I tried to get a grant for this, but they want results of preliminary experiments first. Funding for 1 year would allow us to generate this data after which time, I should be able to get NIH funding.
More information is below and the links to our Trimper Children web site.
In memory of Madeline Britton Trimper
January 17, 1998-November 7, 2005
Sunday, January 8, 2006 1:31 PM CST
4th Annual Trimper Children Fundraiser
"Turn Up the Heat on MLD"
When: Saturday, February 11, 2006 4:00PM-8:00PM
Where: Central Montcalm Upper Elementary
Hawaiian Theme
-Hot Tub Raffle
-Silent Auctions
-Mini Drawings
-Food (Hawaiian)
-MLD Both
-Come have some fun, get warm and win some great prizes.
-Contact Penny or Barb on donating a theme basket and other information.
Penny Burlison
pburlison@cms.masid.com
989-352-7596
or
Barb Millard
bmillard@cms.maisd.com
989-365-3126
Help us with the fight against MLD!
www.trimperchildren.org/EventsSchedule.html
or
www.trimperchildren.org
(Links are below)
Check out the information on the
1st Annual Kick MLD in the Butt Yard Sale.
(Link below)
In memory of Madeline Britton Trimper
January 17, 1998-November 7, 2005
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