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Jo Webb
Jo Webb
I Just want to say hi to Zachary and Shelly. I'm Jo, my daughter Lilah has a venous malformation in the right side of her face. She is 3 years old. She was diagnosed at 9 weeks. We are from the UK and I'm also heavily involved with a support group called www.birthmarksupportgroup.org.uk you can read our story on the members section. She is about to start Bleomycin Injections next month. So far she has had various round of sclero and laser. Like Zachary, she is a brave little girl who amazes me all the time! Anyway hello from the UK, and it would be great to either link to your facebook page or this site from the section on venous malformation on our support site. Let me know if that would be possible. Best wishes Jo & Lilah x 
Madere Olivar
Madere Olivar
Hi, Zachary and family, my son is about Zachary's age.  He had a small, focal AVM in his eyebrow that was removed by Dr. James Suen at UAMS this past March.  We are hoping it is gone for good.

I don't know if you have ever checked out AVMSurvivors.org, but I welcome you to visit and take a look.  There are about 150 members with facial AVMs, and over 500 with some kind of peripheral AVM.  There are quite a few kids who have just been diagnosed and are beginning treatments in Arkansas, and I'm sure their families would love the opportunity to meet you.  One member, Camellia, has similar issues with her teeth from mandibular AVM; perhaps your parents could compare notes on different dental strategies.  My son's profile page is at http://www.avmsurvivors.org/profile/dancermom, if you'd like to take a look.

I try to keep tabs on the different new treatments that people are trying for facial AVMs.  Some are trying doxycycline, rapamycin, or Avastin to try to prevent revascularization.  The more we share our knowledge, the more we know.  I wish you the best and hope that someday your AVM will be history!
janis thompson
janis thompson
Hey Zach,
Enjoyed so much having lunch with you this week and hope we can do this again.  Will look forward to hearing about highschool and how it is all going.  Will want to hear all about your classes.
Maybe we will run into each other at the Shelter.  I love dropping in there from time to time and admire your helping out with the pups that love and crave some attention after a rough way to go.  Pro
michelle davenport
michelle davenport
Hi Shelley and Zachary its been a long time since I last got in touch and was just reading your update on how Zachary has been getting on, I can't believe how much he has grown up in the last 3 and half years as well as Joshua. Glad all is going well with you guys you are both so strong to battle through all you do. Joshua is now 4 and half and due a baby brother or sister anytime now and it has crossed my mind as to wether the new baby would have the same condition, Joshua's face seems to be growing and his malformation stays the same therefore looks less and less visible as he gets older but we also we still have that worry in the back of our minds of the possibility of it growing at some point which I have decided to just deal with it when and if it comes as any procedures done to him would be just cosmetic at this moment so unhappy about putting him through anything at this early stage. Sorry we have not been in touch for so long and will keep you updated on the new arrival.
shelly wong
shelly wong
Hi Zack!!  I am so glad you had a great summer!!  I'll be thinking of you as you travel back to Arkansas.  I also wanted to tell how wonderful it was to see you at school this year- I'll miss you next year, but I know you'll have a great high school freshman year.  Take care buddy, and come see me when you can!!  
Mrs. Wong :)
Jennifer Dodge
Jennifer Dodge
Your story is an inspiration...my daughter who is 16months old, was just diagnosed with a hemangioma and venous malformation. Hers begins in her mouth under her tongue and goes down into her throat, how far we are unsure until we have an MRI. We are now on our journey to finding a doctor who will treat her, we were unaware of exactly how rare these malformations were until now, and just how few doctors there are to treat it.
I wish the best to you and your family, you are a remarkable person:)

Jennifer
Elmer Baumeister
Elmer Baumeister
Grandpa Elmer 05/03/12

Zach and Shelley - I'm so glad that I was able to spend last week with you and your family as Zach went through yet another surgery in the journey to control the VM. I'm so grateful it appears it was successful although it wasn't any easier on "anyone" this time as it was any of the other times. Zach is a real trooper and we are all so proud of him. You are both truly an inspiration to all involved in this journey to combat his VM. Thanks to all involved!!!!

I really enjoyed my extended stay after the surgery - just being together again - relaxing and enjoying each others company. I am so proud of you Shelley for your unending love and commitment for your family and all you have accomplished. I'm glad Hollie and her family were able to come down before the surgery and spend time with you and Zach. I am proud of all of you!!! It also felt good to let me cook a couple of your favorite meals that you enjoyed as you were growing up - it brought back some fond memories. Thank you all again for a very enjoyable week - it went much too fast!

I again thank all those who have been a part of and supported Shelley, Zach and their family throughout this special journey over the last 8 years with whatever you were able to do. I know they are very appreciative of all your thoughts, concerns, acts of kindness, prayers, donations to their special drives in the past (Toy & Stuffed Animal Drive and the Underwear Drive), and following their journey on the Caring Bridge site with all your encouragement, best wishes and thoughtful comments which helps all of them cope with the many hardships they endure. This journey has consumed endless hours of worrying, second guessing decisions, sleepless nights, planning appointments, treatments, surgeries, travel, time missed from work and school, all on top of the every day tasks of trying to raise a family during these difficult times.

And now Shelley and Zach have come up with their next dream - a fundraiser to raise money for families who can't afford the $500.00 to attend the 2012 Vascular Birthmark Foundation Conference. At this Conference they will learn more about the most up to date info on VB's and VM's. Shelley and Zach would like to raise $5,000.00 which would allow 10 needy families to attend this conference which will give them an understanding of VB's and VM's and where to get the help and treatment they will need on their own journeys with their loved ones - much of which Shelley and Zach and her family had to accomplish on their own. What a wonderful, loving and unselfish act of kindness, thoughtfulness and determination!!!!

Donations to the Vascular Birthmark Foundation can be made through the WEB Site included in Zach's Journal. If you are unable to donate I am sure they would appreciate your thoughts and prayers and continued participation on the Caring Bridge WEB Site. You are all a very important part of the Hope and Cure we are all looking forward to -- A Very Heartfelt THANKS TO ALL --

Love Grandpa Elmer
Basia Joyce
Basia Joyce
Hi Zachary.  I just wanted to send a smile your way.  You are a handsome and brave young man.  Thanks to you and your Mom for helping other families by doing a fundraiser for VBF.  Because of your efforts, other families will have the benefit of receiving an accurate diagnosis and treatment plan!


Hugs!


Basia Joyce, VBF Executive Assistant


 


 
Mary  Gluchman
Mary Gluchman
Hi Zach!  I know it has been several years since I last saw you, but I have always looked forward to receiving updates on how you're doing.  I think of you often.  I'm also so happy and impressed that you are doing so well academically!  I will keep you in my prayers and hopes that this next round of procedures goes as well as can be expected. 


Love always,


Mary Gluchman
Dean Gann
Dean Gann
Hey Zach!


Every time I pass the Eagle Point entrance I think about you.  I assume that you guys still live there.   I have some good stories and pictures to share with you when you get to feeling better.  Hang in there and let me know when you are home and up to visiting.    Also, let me know if I can help with anything.   Looking forward to seeing you.


Dean Gann (retired teacher and loving it)


 
Madere Olivar
Madere Olivar
Hi, Zachary and family, my son is about Zachary's age.  He had a small, focal AVM in his eyebrow that was removed by Dr. James Suen at UAMS this past March.  We are hoping it is gone for good.

I don't know if you have ever checked out AVMSurvivors.org, but I welcome you to visit and take a look.  There are about 150 members with facial AVMs, and over 500 with some kind of peripheral AVM.  There are quite a few kids who have just been diagnosed and are beginning treatments in Arkansas, and I'm sure their families would love the opportunity to meet you.  One member, Camellia, has similar issues with her teeth from mandibular AVM; perhaps your parents could compare notes on different dental strategies.  My son's profile page is at http://www.avmsurvivors.org/profile/dancermom, if you'd like to take a look.

I try to keep tabs on the different new treatments that people are trying for facial AVMs.  Some are trying doxycycline, rapamycin, or Avastin to try to prevent revascularization.  The more we share our knowledge, the more we know.  I wish you the best and hope that someday your AVM will be history!
michelle davenport
michelle davenport
Hi Shelley and Zachary its been a long time since I last got in touch and was just reading your update on how Zachary has been getting on, I can't believe how much he has grown up in the last 3 and half years as well as Joshua. Glad all is going well with you guys you are both so strong to battle through all you do. Joshua is now 4 and half and due a baby brother or sister anytime now and it has crossed my mind as to wether the new baby would have the same condition, Joshua's face seems to be growing and his malformation stays the same therefore looks less and less visible as he gets older but we also we still have that worry in the back of our minds of the possibility of it growing at some point which I have decided to just deal with it when and if it comes as any procedures done to him would be just cosmetic at this moment so unhappy about putting him through anything at this early stage. Sorry we have not been in touch for so long and will keep you updated on the new arrival.
Jennifer Dodge
Jennifer Dodge
Your story is an inspiration...my daughter who is 16months old, was just diagnosed with a hemangioma and venous malformation. Hers begins in her mouth under her tongue and goes down into her throat, how far we are unsure until we have an MRI. We are now on our journey to finding a doctor who will treat her, we were unaware of exactly how rare these malformations were until now, and just how few doctors there are to treat it.
I wish the best to you and your family, you are a remarkable person:)

Jennifer
Elmer Baumeister
Elmer Baumeister
Grandpa Elmer 05/03/12

Zach and Shelley - I'm so glad that I was able to spend last week with you and your family as Zach went through yet another surgery in the journey to control the VM. I'm so grateful it appears it was successful although it wasn't any easier on "anyone" this time as it was any of the other times. Zach is a real trooper and we are all so proud of him. You are both truly an inspiration to all involved in this journey to combat his VM. Thanks to all involved!!!!

I really enjoyed my extended stay after the surgery - just being together again - relaxing and enjoying each others company. I am so proud of you Shelley for your unending love and commitment for your family and all you have accomplished. I'm glad Hollie and her family were able to come down before the surgery and spend time with you and Zach. I am proud of all of you!!! It also felt good to let me cook a couple of your favorite meals that you enjoyed as you were growing up - it brought back some fond memories. Thank you all again for a very enjoyable week - it went much too fast!

I again thank all those who have been a part of and supported Shelley, Zach and their family throughout this special journey over the last 8 years with whatever you were able to do. I know they are very appreciative of all your thoughts, concerns, acts of kindness, prayers, donations to their special drives in the past (Toy & Stuffed Animal Drive and the Underwear Drive), and following their journey on the Caring Bridge site with all your encouragement, best wishes and thoughtful comments which helps all of them cope with the many hardships they endure. This journey has consumed endless hours of worrying, second guessing decisions, sleepless nights, planning appointments, treatments, surgeries, travel, time missed from work and school, all on top of the every day tasks of trying to raise a family during these difficult times.

And now Shelley and Zach have come up with their next dream - a fundraiser to raise money for families who can't afford the $500.00 to attend the 2012 Vascular Birthmark Foundation Conference. At this Conference they will learn more about the most up to date info on VB's and VM's. Shelley and Zach would like to raise $5,000.00 which would allow 10 needy families to attend this conference which will give them an understanding of VB's and VM's and where to get the help and treatment they will need on their own journeys with their loved ones - much of which Shelley and Zach and her family had to accomplish on their own. What a wonderful, loving and unselfish act of kindness, thoughtfulness and determination!!!!

Donations to the Vascular Birthmark Foundation can be made through the WEB Site included in Zach's Journal. If you are unable to donate I am sure they would appreciate your thoughts and prayers and continued participation on the Caring Bridge WEB Site. You are all a very important part of the Hope and Cure we are all looking forward to -- A Very Heartfelt THANKS TO ALL --

Love Grandpa Elmer
Mary  Gluchman
Mary Gluchman
Hi Zach!  I know it has been several years since I last saw you, but I have always looked forward to receiving updates on how you're doing.  I think of you often.  I'm also so happy and impressed that you are doing so well academically!  I will keep you in my prayers and hopes that this next round of procedures goes as well as can be expected. 


Love always,


Mary Gluchman
Jo Webb
Jo Webb
I Just want to say hi to Zachary and Shelly. I'm Jo, my daughter Lilah has a venous malformation in the right side of her face. She is 3 years old. She was diagnosed at 9 weeks. We are from the UK and I'm also heavily involved with a support group called www.birthmarksupportgroup.org.uk you can read our story on the members section. She is about to start Bleomycin Injections next month. So far she has had various round of sclero and laser. Like Zachary, she is a brave little girl who amazes me all the time! Anyway hello from the UK, and it would be great to either link to your facebook page or this site from the section on venous malformation on our support site. Let me know if that would be possible. Best wishes Jo & Lilah x 
janis thompson
janis thompson
Hey Zach,
Enjoyed so much having lunch with you this week and hope we can do this again.  Will look forward to hearing about highschool and how it is all going.  Will want to hear all about your classes.
Maybe we will run into each other at the Shelter.  I love dropping in there from time to time and admire your helping out with the pups that love and crave some attention after a rough way to go.  Pro
shelly wong
shelly wong
Hi Zack!!  I am so glad you had a great summer!!  I'll be thinking of you as you travel back to Arkansas.  I also wanted to tell how wonderful it was to see you at school this year- I'll miss you next year, but I know you'll have a great high school freshman year.  Take care buddy, and come see me when you can!!  
Mrs. Wong :)
Basia Joyce
Basia Joyce
Hi Zachary.  I just wanted to send a smile your way.  You are a handsome and brave young man.  Thanks to you and your Mom for helping other families by doing a fundraiser for VBF.  Because of your efforts, other families will have the benefit of receiving an accurate diagnosis and treatment plan!


Hugs!


Basia Joyce, VBF Executive Assistant


 


 
Dean Gann
Dean Gann
Hey Zach!


Every time I pass the Eagle Point entrance I think about you.  I assume that you guys still live there.   I have some good stories and pictures to share with you when you get to feeling better.  Hang in there and let me know when you are home and up to visiting.    Also, let me know if I can help with anything.   Looking forward to seeing you.


Dean Gann (retired teacher and loving it)


 
janis thompson
janis thompson
Hey Zach,
Enjoyed so much having lunch with you this week and hope we can do this again.  Will look forward to hearing about highschool and how it is all going.  Will want to hear all about your classes.
Maybe we will run into each other at the Shelter.  I love dropping in there from time to time and admire your helping out with the pups that love and crave some attention after a rough way to go.  Pro
Jennifer Dodge
Jennifer Dodge
Your story is an inspiration...my daughter who is 16months old, was just diagnosed with a hemangioma and venous malformation. Hers begins in her mouth under her tongue and goes down into her throat, how far we are unsure until we have an MRI. We are now on our journey to finding a doctor who will treat her, we were unaware of exactly how rare these malformations were until now, and just how few doctors there are to treat it.
I wish the best to you and your family, you are a remarkable person:)

Jennifer
Dean Gann
Dean Gann
Hey Zach!


Every time I pass the Eagle Point entrance I think about you.  I assume that you guys still live there.   I have some good stories and pictures to share with you when you get to feeling better.  Hang in there and let me know when you are home and up to visiting.    Also, let me know if I can help with anything.   Looking forward to seeing you.


Dean Gann (retired teacher and loving it)


 
Jo Webb
Jo Webb
I Just want to say hi to Zachary and Shelly. I'm Jo, my daughter Lilah has a venous malformation in the right side of her face. She is 3 years old. She was diagnosed at 9 weeks. We are from the UK and I'm also heavily involved with a support group called www.birthmarksupportgroup.org.uk you can read our story on the members section. She is about to start Bleomycin Injections next month. So far she has had various round of sclero and laser. Like Zachary, she is a brave little girl who amazes me all the time! Anyway hello from the UK, and it would be great to either link to your facebook page or this site from the section on venous malformation on our support site. Let me know if that would be possible. Best wishes Jo & Lilah x 
michelle davenport
michelle davenport
Hi Shelley and Zachary its been a long time since I last got in touch and was just reading your update on how Zachary has been getting on, I can't believe how much he has grown up in the last 3 and half years as well as Joshua. Glad all is going well with you guys you are both so strong to battle through all you do. Joshua is now 4 and half and due a baby brother or sister anytime now and it has crossed my mind as to wether the new baby would have the same condition, Joshua's face seems to be growing and his malformation stays the same therefore looks less and less visible as he gets older but we also we still have that worry in the back of our minds of the possibility of it growing at some point which I have decided to just deal with it when and if it comes as any procedures done to him would be just cosmetic at this moment so unhappy about putting him through anything at this early stage. Sorry we have not been in touch for so long and will keep you updated on the new arrival.
Madere Olivar
Madere Olivar
Hi, Zachary and family, my son is about Zachary's age.  He had a small, focal AVM in his eyebrow that was removed by Dr. James Suen at UAMS this past March.  We are hoping it is gone for good.

I don't know if you have ever checked out AVMSurvivors.org, but I welcome you to visit and take a look.  There are about 150 members with facial AVMs, and over 500 with some kind of peripheral AVM.  There are quite a few kids who have just been diagnosed and are beginning treatments in Arkansas, and I'm sure their families would love the opportunity to meet you.  One member, Camellia, has similar issues with her teeth from mandibular AVM; perhaps your parents could compare notes on different dental strategies.  My son's profile page is at http://www.avmsurvivors.org/profile/dancermom, if you'd like to take a look.

I try to keep tabs on the different new treatments that people are trying for facial AVMs.  Some are trying doxycycline, rapamycin, or Avastin to try to prevent revascularization.  The more we share our knowledge, the more we know.  I wish you the best and hope that someday your AVM will be history!
shelly wong
shelly wong
Hi Zack!!  I am so glad you had a great summer!!  I'll be thinking of you as you travel back to Arkansas.  I also wanted to tell how wonderful it was to see you at school this year- I'll miss you next year, but I know you'll have a great high school freshman year.  Take care buddy, and come see me when you can!!  
Mrs. Wong :)
Elmer Baumeister
Elmer Baumeister
Grandpa Elmer 05/03/12

Zach and Shelley - I'm so glad that I was able to spend last week with you and your family as Zach went through yet another surgery in the journey to control the VM. I'm so grateful it appears it was successful although it wasn't any easier on "anyone" this time as it was any of the other times. Zach is a real trooper and we are all so proud of him. You are both truly an inspiration to all involved in this journey to combat his VM. Thanks to all involved!!!!

I really enjoyed my extended stay after the surgery - just being together again - relaxing and enjoying each others company. I am so proud of you Shelley for your unending love and commitment for your family and all you have accomplished. I'm glad Hollie and her family were able to come down before the surgery and spend time with you and Zach. I am proud of all of you!!! It also felt good to let me cook a couple of your favorite meals that you enjoyed as you were growing up - it brought back some fond memories. Thank you all again for a very enjoyable week - it went much too fast!

I again thank all those who have been a part of and supported Shelley, Zach and their family throughout this special journey over the last 8 years with whatever you were able to do. I know they are very appreciative of all your thoughts, concerns, acts of kindness, prayers, donations to their special drives in the past (Toy & Stuffed Animal Drive and the Underwear Drive), and following their journey on the Caring Bridge site with all your encouragement, best wishes and thoughtful comments which helps all of them cope with the many hardships they endure. This journey has consumed endless hours of worrying, second guessing decisions, sleepless nights, planning appointments, treatments, surgeries, travel, time missed from work and school, all on top of the every day tasks of trying to raise a family during these difficult times.

And now Shelley and Zach have come up with their next dream - a fundraiser to raise money for families who can't afford the $500.00 to attend the 2012 Vascular Birthmark Foundation Conference. At this Conference they will learn more about the most up to date info on VB's and VM's. Shelley and Zach would like to raise $5,000.00 which would allow 10 needy families to attend this conference which will give them an understanding of VB's and VM's and where to get the help and treatment they will need on their own journeys with their loved ones - much of which Shelley and Zach and her family had to accomplish on their own. What a wonderful, loving and unselfish act of kindness, thoughtfulness and determination!!!!

Donations to the Vascular Birthmark Foundation can be made through the WEB Site included in Zach's Journal. If you are unable to donate I am sure they would appreciate your thoughts and prayers and continued participation on the Caring Bridge WEB Site. You are all a very important part of the Hope and Cure we are all looking forward to -- A Very Heartfelt THANKS TO ALL --

Love Grandpa Elmer
Basia Joyce
Basia Joyce
Hi Zachary.  I just wanted to send a smile your way.  You are a handsome and brave young man.  Thanks to you and your Mom for helping other families by doing a fundraiser for VBF.  Because of your efforts, other families will have the benefit of receiving an accurate diagnosis and treatment plan!


Hugs!


Basia Joyce, VBF Executive Assistant


 


 
Mary  Gluchman
Mary Gluchman
Hi Zach!  I know it has been several years since I last saw you, but I have always looked forward to receiving updates on how you're doing.  I think of you often.  I'm also so happy and impressed that you are doing so well academically!  I will keep you in my prayers and hopes that this next round of procedures goes as well as can be expected. 


Love always,


Mary Gluchman