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I am so sorry to read about Hunter. I just stopped by because I was reading Garrhett's Guestbook that I can never delete and I saw the posts about Tommy and our time there at Duke with Garrhett. I remember all the kid's who went through transplant with Garrhett and while I worked there, often. You are a strong family. You will all be in my prayers. Another Angel watches over us....
Diane Stadler (Garrhett Humphrey's Mom)
Monaca, PA - Pennsylvania - Saturday, September 19, 2015 0:27 AM CDT
I am so sad to hear about Hunter. My heart is broken for you all. I've held you all close in thought and prayer since before Tommy's passing. Praying for peace for you all, I can only imagine the void he's left for you all.
Jennifer
Silverdale, WA - Monday, March 23, 2015 7:02 PM CDT
Alicia, John, Ciara, Hunter, and Tommy
You have been in my prayers for over 11 years now. Hunter was a very personable kid who enjoyed life to the maximum extent possible. The best part of Hunter's life is that he had the most awesome parents any teenager could have. Having met you both, I know that this is true as anyone who has ever met you would have to agree. I am sorry for your loss of his daily "physical" presence; however, we all know that he will always be present in your lives because he is a permanent part of you.
Stan Jones <imajones@comcast.net>
Rancho Cordova, CA USA - Wednesday, February 4, 2015 0:00 AM CST
i am so sorry for your loss. There are no words. My thoughts and prayers go out to you.
Mary <geislermom@hotmail.com>
Manassas, Va - Wednesday, January 14, 2015 9:55 AM CST
I am so very sorry. I have followed your blog and prayed for your family for years. I continue to pray for you all. I
Tracey <dewey30_1999@yahoo.com>
Portsmouth, VA USA - Monday, January 12, 2015 9:27 AM CST
I have followed your story and prayed for you for many years.........this post is a shock and I can only continue to pray and send all my loving thoughts your way. I am so very sorry for your loss.
Kriss Mac
Minneapolis, MN - Sunday, January 11, 2015 11:52 AM CST
Hang in there Hunter and Ciara, and Alicia and John too! Our thoughts and prayers are with you.
Robert Gunn <robg@surewest.net>
Elk Grove, ca - Wednesday, March 26, 2014 4:29 PM CDT
Praying for you all, Alicia, John, Ciara and Hunter. Hoping the kids do not need any more interventions and will overcome this obstacle soon.
Jennifer
Bremerton, Wa - Monday, March 17, 2014 4:45 PM CDT
Thinking of you. Praying all is well with your family.
Mary <geislermom@hotmail.com>
- Monday, June 24, 2013 4:58 PM CDT
Alicia, John, Ciara, Hunter, Janine, Alyssa
Still thinking of you and remembering you and praying for your family. Nothing changed here except I am now retired from the State and keeping busy.
Best wishes,
Stan Jones <imajones@comcast.net>
Rancho Cordova, CA USA - Thursday, March 7, 2013 4:51 AM CST
Time for an update !
Robert Greenwood
Pacific Palisades, CA U. S. - Tuesday, March 5, 2013 11:51 AM CST
Love you guys!! Doing an awesome job and thank God you just "happened" to have an appointment with the doc!! Hopefully timing was everything for your young man xo
Danielle O'Connor <lieuslady@yahoo.com>
- Friday, November 30, 2012 1:56 PM CST
Revelation 21:3-4 We look forward to a time when no one will say I am sick. I lost my wonderful, happy smiling brother to this disease. I miss him so but I remember him thru your children.
Diane Hooper <dhclean3156@gmail.com>
Smyrna, TN Rutherford - Thursday, November 1, 2012 8:04 PM CDT
Just wanted to mention that I love those ladybugs!!!
Hugs to Hunter and Ciara!! Take it easy on mommy you two!
Love,
Patty and Jesse
http://www.caringbridge.org/md/myjesse
Patty and Jesse
Baltimore, MD USA - Wednesday, October 24, 2012 9:17 PM CDT
So sweet.. Thank you Tommy for helping your Hunter and Ciara, and especially mom and dad!!! xoxoxox
http://www.caringbridge.org/md/myjesse
Patty and Jesse <wordinedge@aol.com>
Baltimore, MD USA - Thursday, September 6, 2012 8:01 AM CDT
Love u guys. The rainbow story so beautiful! Hugs and ill have jimmy n allie make a lady bug. Xooxoxo
lin <jimmykq@bellsouth.net>
boca raton, fl usofa - Thursday, September 6, 2012 6:04 AM CDT
I love, love, love all the photos of your sweet family. God Bless you all.
Yvonne Porter <yvonne.d.porter@gmail.com>
Saltville , VA USA - Tuesday, August 14, 2012 12:29 AM CDT
yeah for the new wheelchairs!
robert gunn <robg@surewest.net>
elk grove, ca - Friday, August 3, 2012 5:07 PM CDT
Prayers from a MPS111 Nannna(Karsyn Wallace)
Tanya Fulkerson <sugarbir@bellsouth.net>
Louisville, KY USA - Sunday, July 8, 2012 2:21 PM CDT
Love the new chairs! xoxo
Valerie Barnett <val429@gmail.com>
Bloomington, IL USA - Saturday, July 7, 2012 12:17 AM CDT
Love the new chairs!! Keep on truckin' thru this journey, it's all we can do!!
Love you,
Patty and Jesse
www.caringbridge.org/md/myjesse
Patty
Baltimore, MD USA - Friday, July 6, 2012 10:45 PM CDT
Hi, thanks for the update Alicia, though I do keep up on FB too:-))) I hadn't seen any photos of Ciara on her 16th birthday, so was great to see the lovely photo of her with Hunter in the cactus garden. Think of you all often, sending lots of love & hugs, from Louise (Georgia's mum) xxxx
Louise Lewis
Chepstow, monmouthshire United Kingdom - Friday, July 6, 2012 2:57 PM CDT
Thanks for the update...glad to see both kids are doing well, even with a few bumps in the road.
Suzanne
Chapel Hill, NC USA - Thursday, July 5, 2012 10:13 AM CDT
hi, my names julie. i go on the mps forum. saw you have some birtdays coming up. happy birthday to them both. so heartwrencing to see you have three sanfilippo children. we have one, noah, who's eight. craig and i have been together since we were fifteen, and have had eight beautiful children, with only noah with this dreaded syndrome.it's really unfair isn't it. take care all of you. love julie
julie bevan <juliebevan8@bigpond.com>
brisbane, qld australia - Tuesday, July 3, 2012 10:18 PM CDT
Ciara, Happy birthday . We think of you and your family often. All is well in Idaho. Thank You for updating. Annabelle and I say hi to your family. Annabelle green and Christine Barrietua
Christine Barrietua <cbarrietua@yahoo.com / saveannabelle.org>
Boise, IDE USA - Saturday, May 26, 2012 4:37 PM CDT
It has been 9 years and I still think about you often. Love and Prayers
Diane Petrella (Humphrey) ~Garrhett's~ Mom
Morrisville, nc usa - Monday, May 21, 2012 11:10 PM CDT
Dear Ciara,
Happy birthday to you!! Sixteen years little lady, that is great! We wish you many more happy birthdays to come! We think of you and your family, with the warmest feelings.
Love to you all,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Thursday, May 17, 2012 2:09 PM CDT
Ciara...you are now 16 (ok so I should have signed yesterday, but I did call). Happy Birthday little lady!
alyssa <sabiemc@aol.com>
boston, ma - Tuesday, May 8, 2012 12:52 AM CDT
5 more days until someone special turns the big 1-6! So proud of you Ciara...you have fought so hard to beat the odds! Love you!
alyssa <sabiemc@aol.com>
Boston, MA - Wednesday, May 2, 2012 2:47 PM CDT
I think of you guys all the time.
Casey <cmj80@yahoo.com>
- Thursday, April 26, 2012 2:38 AM CDT
Dear Alicia, John, Ciara and Hunter,
Just a little note to let you know that we think of you! It is already nine years ago that we met in Duke. Hard to believe it is such a long time ago..
Love to you all,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Sunday, April 1, 2012 3:21 PM CDT
You are one strong lady! I am so sorry that the two of you had such a rough couple of days!
Stacy Johnson
Pine Grove, Ca - Monday, January 23, 2012 11:24 PM CST
I think of you often, especially at this time of year. May God continue to watch over you and your family.
Love,
Angel Alex Haigler's mom
Camilla Haigler <camilla.haigler@averydennison.com>
Gray Court, SC - Monday, November 28, 2011 3:33 PM CST
Yay, I made front page, lol! And dont worry I feel the same way about Christmas. Except my kids are asking for things they cant play with. Now I gotta go update our caringbridge. Great seeing all of you!!
Gabrielle Rivas <gabriellerivas@att.net>
South El Monte, CA USA - Monday, November 14, 2011 11:42 AM CST
hi,
it's great hear you are all out and about and enjoying the beautful Fall. Happy Halloween!!!
robert gunn <robg@surewest.net>
elk grove, - Friday, October 28, 2011 1:07 PM CDT
Thank you for letting me know about the Beg girls. I have been thinking about them and wondering how they were. I cannot imagine what you all go through all the time. You have beautiful children and I will continue to keep all of you in my prayers.
Martha Davis <milton.davis6@verizon.net>
Garland, tx usa - Thursday, October 20, 2011 6:59 PM CDT
I love checking up on you and keep you in my prayers. Happy Halloween!! Do you know anything about the Beg girls. She hasn't updated in a long time and I am worried about them. I appreciate you letting us know how your children are doing.
Martha Davis
Garland, Tx USA - Wednesday, October 19, 2011 5:17 PM CDT
Happy Halloween!
Mary <miniteasets@mail2world.com>
Worth, IL USA - Tuesday, October 18, 2011 2:37 PM CDT
Happy Birthday sweet angel. Today you would have been 12. Hard to believe! I think of you everyday, but especially special days like these. Love you bunches!
Alyssa <sabiemc@aol.com>
Boston, MA - Sunday, September 18, 2011 1:34 PM CDT
Just going through my files to look for things that I don't need to save anymore and came to Bennett folder and realized that I haven't extended Best Wishes in a long time, so I was just checking in to let you know that you are each still in my prayers. I wish you the best that can be for each of you and together as a family. You are awesome. I was also appreciative to have been able to meet you all in person since I don't live far from Ione(also to meet your mother and sister). Best wishes and prayers for safe travel to St. Louis and wherever else your journey may take you.
Stan Jones <imajones@comcast.net>
Rancho Cordova, CA USA - Monday, July 18, 2011 3:29 PM CDT
Hi Alicia.I did not realize your son was in the hospital when i contacted you today,i just read it on your update. I really sorry to hear that. I will keep him and your family in my prayers. I know its hard to deal with the nurses and docs when your child is sick.I know you don`t know me but if you need another friend to talk to I.m a good listener.
Djuna(DJ) <djuna1027@comcast.net>
Taneytown, md - Wednesday, July 13, 2011 2:43 PM CDT
{{{ALICIA}}} I am so sorry to read this update. Poor, sweet Hunter. I'm glad he finally did calm down a bit. That will give him the rest he needs so he can come home soon. Prayers surrounding the Bennetts!
Linda from Tallahassee
- Wednesday, July 13, 2011 12:36 AM CDT
Oh Alicia I don't know what to say. My heart is breaking. I'm glad he's got his fight back. I am praying for Hunter's recovery soon. If you need to talk or need anything please let me know. Love to all of you!
Nancy <nancy.mondry@ci.stpaul.mn.us>
Saint Paul, MN United States - Wednesday, July 13, 2011 10:19 AM CDT
And more, why the heck cant Ciara stay there? Why do they have to be so damn rigid in their stupid rules? My God, she can't even get out of her wheelchair and be disruptive or make a pest of herself. What is the effing harm letting her stay a few hours later? Especially when they know your son gets so upset when you leave? It is like they are deliberately trying to make things harder, as if they weren't hard enough. I'd like to call that hospital and give them a piece of my mind. They need to back the hell off and SUPPORT your family, not try to make things worse.
Rita B
- Wednesday, July 13, 2011 2:04 AM CDT
I am so angry for you that hospital manager talked to you like that. With what you are struggling with, how DARE he??? You are doing the very best you can in a VERY difficult situation. Who gives a fuck if she lays on Hunter's bed? Is Hunter complaining? No? The that guy needs to STFU. Maybe he could HELP the situation instead of making something so hard even harder. I'd like to see HIM deal with everything you are dealing with, with so much grace and courage and strength. I wish I had money to send to help you with care for your little girl. I can pray and I am praying your sweet boy comes home soon, healthy. You are an incredible mother, doing an amazing job with your children. God knew what he was doing when he chose you to be the mother of those angels, you are the very best mother they could ever have. God bless your entire family.
Rita B
- Wednesday, July 13, 2011 1:59 AM CDT
Alicia I feel terrible that you all have to go through so much! I am praying that Hunter's lungs clear up, that Ciara gets comfortable and that you most of all get to relax alittle! HUGS!
Nancy <nancy.mondry@ci.stpaul.mn.us>
Saint Paul, MN United States - Tuesday, July 12, 2011 11:05 AM CDT
Beautiful Caring Bridge page! Praying for Hunter's quick recovery. Asked my angels, Maggie and Keegan, to bring him comfort.
Cheryl Hackett <cherylhackett@yahoo.com>
Mequon, WI USA - Thursday, July 7, 2011 8:04 AM CDT
Alicia, thinking of you all & praying so hard for Hunter, lots of love & hugs, Louise & Georgia xxxx
Louise Lewis
Chepstow, UK - Thursday, July 7, 2011 7:06 AM CDT
Sending love and prayers for you all....
Paula Baker Bryan <pjbryan2227@yahoo.com>
Atlantic Beach, NC USA - Thursday, July 7, 2011 0:13 AM CDT
Still think of you almost everyday........Happy things seem to be going well.....God Bless you all............
Diane Petrella (Humphrey) ~~Garrhett's~~ Mom
Morrisville, NC USA - Thursday, June 2, 2011 10:55 PM CDT
Hello Bennetts! :) John, Alicia, Ciara, Hunter & Angel Tommy!
We are glad to hear Hunter doesn't need surgery and is doing so much better since you figured out what was causing him to be himself! :)
 HUNTER!
And we must wish Little Miss Ciara, who is not so little anymore, A HAPPY FIFTEENTH BIRTHDAY<3
We cannot believe how big she has gotten and how fast she has grown up! What an amazing young women she is! :)
And we cannot forget about Hunter & Ciara's amazing Mom & Dad! We hope all is well with you and we know Tommy is looking down on you always and smiling!
Take Care & Stay well,
*The Gapa Gang!*
Skip, Sandy, Bill, Tori, Nate & Meghan :)
Meghan Gapa a.k.a. Nater's lil' sista! www.caringbridge.org/ny/naters_page <gaphouse@yahoo.com>
Lyndonville, NY ***USA*** - Sunday, May 29, 2011 10:00 PM CDT
Alicia - you are such an awesome Mom! I know you'll say "I'm just doing what any mom would do", but you do it well and with spunk! I'm just thankful that I met you and wish you all the prayers in the world! I'm so glad Hunter does not need surgery. That must have drove you nuts! Ciara looked so cute with her smiles on her 15th Birthday! Sabrina is doing a little bit better with her meds adjustments. She's still pretty strong and active. So I'm really blessed with her strength and resilience. Keep doing what you're doing as stressful and tiring as it can be. Our mommy duties go beyond over-time. Take care!
Luella Gabriel <lalagabriel@sbcglobal.net>
Fairfield, CA United States - Saturday, May 21, 2011 1:08 AM CDT
Happy Mother's Day to one of the most awesome mothers I have ever met! Think of you and family often. Tommy sends Mother's Day wishes/love from above.
And happy belated Birthday Ms. Ciara! Can't believe how time flies....15 years old????
Kelly Seibert <RSeib44725@bellsouth.net>
Hillsborough, NC USA - Sunday, May 8, 2011 8:45 AM CDT
Happy birthday Ciara!! We hope you have a wonderful day with your family and friends! We think of you!
Love to you all,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Saturday, May 7, 2011 1:59 PM CDT
Happy 15th Birthday Ciara. I am so proud of all you have overcome. You are a true fighter. Love you bunches!
Alyssa <sabiemc@aol.com>
Boston, MA USA - Saturday, May 7, 2011 12:20 AM CDT
I am surprised nobody came on here a few days ago to wish you a happy 21st birthday. =) Love ya!
alyssa <sabiemc@aol.com>
Boston, MA USA - Thursday, April 14, 2011 7:26 PM CDT
Sigh....there I go again. Thinking Hunter's birthday is the 28th....it's the 25! Stupid me! Happy Belated Birthday Hunter!!!!!!
Alyssa <sabiemc@aol.com>
Boston, MA 02451 - Monday, March 28, 2011 5:18 PM CDT
Love the new layout...and wait..what? Hunter....crazy Hunter is going to be 13 this year! Where did the time go! Yesterday he was 5 swinging at me while I was running for my life, LOL. You have two teenagers now! You old lady you. =)
alyssa <sabiemc@aol.com>
Waltham, MA - Wednesday, March 23, 2011 8:23 PM CDT
Aww, Ciara has the cutest little expression in that main photo. How cute♥
Rita
- Monday, March 21, 2011 10:44 PM CDT
hoping no news is good news. Keeping you family in my prayers.
terri
- Friday, February 11, 2011 0:04 AM CST
 Hunter! :) We hate seeing you sick little guy!
And tell Ciara to keep doing well!
lovelovelove, -Meghan & Nater Gapa-
http://www.caringbridge.org/ny/naters_page/
Meghan Gapa a.k.a. Nater's lil' sista! www.caringbridge.org/ny/naters_page <gaphouse@yahoo.com>
Lyndonville, NY ***USA*** - Tuesday, February 8, 2011 3:27 PM CST
It is good to see those sweet eyes open! I am praying that Hunter continues to improve, and for your strength...love and hugs, Paula
Paula Baker Bryan <pjbryan2227@yahoo.com>
Kinston, NC USA - Tuesday, February 8, 2011 9:44 AM CST
((HUGS)) Been praying every day Alicia, and hoping he continues to improve every day. xxxxxxx
Therese Estrada <trid2b4@sbcglobal.net>
Morris, IL US - Tuesday, February 8, 2011 8:31 AM CST
Sending get well wishes to Hunter! xoxoxoxoxoxxoxox
Kim & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net>
- Tuesday, February 8, 2011 7:57 AM CST
Praying...
alyssa <sabiemc@aol.com>
boston, ma 02451 - Tuesday, February 8, 2011 7:15 AM CST
Hi Alicia, so pleased to read that there is improvement with Hunter, although still very fragile. Sending you lots of love, hugs and prayers from England xxxxx
Ria, Dave & Jasmin <Riaheap@aol.com>
UK - Tuesday, February 8, 2011 1:03 AM CST
So happy to see a positive update for this sweet child. What a little cutie. Continued prayers for healing, and strength for mama.
RMB
- Monday, February 7, 2011 11:54 PM CST
Praying for you all, especially Hunter.
Hugs, hugs, hugs,
Elizabeth
Elizabeth Schuepbach
Meikirch, Switzerland - Monday, February 7, 2011 2:38 PM CST
Praying that things are improving for hunter.
Terri
- Sunday, February 6, 2011 10:05 PM CST
Praying for Hunter!! Also know that God is with you and he will give you the strength to get through this..
Shawna
- Saturday, February 5, 2011 8:03 PM CST
Praying for your son
RMB
- Saturday, February 5, 2011 2:03 PM CST
Not sure when Hunter got sick but many prayers are being sent to Hunter and family
Terri
- Saturday, February 5, 2011 0:25 AM CST
Just read your pages, lovely poem and tributes to your precious Tommy as well as Ciara and Hunter. Am going to text my friend with thevest.com details-it sounds amazing. Her little man has Hunter's and always has a bad chest.
I know I've said it on Facebook but you really are an inspiration to us all. I struggle with my two boys sometimes-behaviour usually- then get down about the Hunter's although I know lucky I am to have them so well.
Best wishes to you and your lovely family this Christmas from all of us across the point in snowy England x x x x
CLAIRE STEVENS <clairestevens77@hotmail.com>
SURREY, UK - Tuesday, December 21, 2010 5:38 AM CST
Thinking of you all and especially of you ^^Tommy^^,
Love and hugs,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Sunday, November 28, 2010 3:59 PM CST
Miss your updates about Ciara and Hunter. Do hope they are doing well. I have followed your site since Tommy was at Duke and my Grandson Julian Mezey was there at the same time.
He passed away.....I'm hoping the children are staying well and want to congratulate John on becoming a Nurse and you for being such a dedicated, loving Mother.
Mary M. Ellis <marym22_99@yahoo.com>
Urbana, IL USA - Saturday, November 13, 2010 9:29 AM CST
miss your updates hope all is well with your family
terri <terri@yahoo.com>
- Thursday, November 11, 2010 10:36 PM CST
Been a long time friends of the bennets my son has gone to school at one time with the kids.
Tammy Demetrus and family <tammydemetrus2006@gmail.com>
Pine Grove, ca - Monday, October 25, 2010 11:50 AM CDT
Just stopping by to say hi and to wish you a wonderful fall week.I haven't been by for a bitust wanted to check in and see how you all are doing.Happy Heavenly Birthday Tommy.
God bless,love & hugs,Linn,Daniel,Michael and Ariel
The Marrero's <gillinn7@msn.com>
- Sunday, September 19, 2010 12:57 AM CDT
Dear friends,
We don't have one memorie of Tommy, we have thousands of memories!!!And only good ones. We cherish them, Tommy changed our lifes in a very important way. We will never forget his sweet smile and his good temper!
Love and hugs from us all to you all on this very special day,
Harmen , Hanna, Jan and Jacomien
Haren, The Netherlands - Saturday, September 18, 2010 2:54 PM CDT
Hi Alicia,
Just saw the pictures of the Kassi's Kause Run. Beautiful and emotional! Thanks so much for your update! You are wonderful!
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Thursday, September 9, 2010 2:36 PM CDT
I saw your post to Toby Keith on Facebook and was intrigued, having never heard of the disease you speak of. My prayers go up for you and your children. I am also the mother of a deceased child and I can feel your pain. Please know that God is merciful and just and that your children are in his hands. I will continue to pray for you and your family. XOXOXO
Sharon Waters
- Friday, August 20, 2010 12:59 AM CDT
Article on a family with a child with sanfilippo.
http://seattletimes.nwsource.com/html/localnews/2012610516_sanfilippo.html
Beth
- Friday, August 13, 2010 9:37 AM CDT
Alicia, I read your comments on the Daily News story on Jonah from Brooklyn. We have also been in contact with the family and were very happy to see the article in the newspaper. My 5 yr old daughter Emily was just diagnosed with MPS3 in late May and its been an unbelieveable ride of emotions since finding out. Thank you for your continuing fight and all the information you have provided us already on your site. Keep the faith and continue to fight. Thank you again. God bless.
Kevin O'Connor <kojr34@aol.com>
Ronkonkoma , NY USA - Tuesday, August 3, 2010 8:54 AM CDT
Hi Ciara & Hunter, just stopping by to see how you're doing! So glad to hear that you're both well! Lots of love from Louise & Georgia xxx
Louise Lewis
Chepstow, UK - Saturday, July 31, 2010 3:12 PM CDT
Hello Bennett Family
Just wanted to stop by and wish you a Happy Independence Day. I hope your day is filled with fun and no medical surprises.
Hugs~
Casey caringbridge.org/visit/littleandrewspage
Casey Shaffer <butterflycasey88@aol.com>
Boardman, OH - Saturday, July 3, 2010 4:59 PM CDT
Congratulations John! You DID it!!!
Ciara looked like she was enjoying the roller skating. Hope Hunter is doing better now. Hope you all have a great summer!
Kelly Seibert <rseib44725@bellsouth.net>
hillsborough, NC USA - Monday, May 24, 2010 6:11 AM CDT
Congratulations to John! Well, DONE! I'm so sorry Hunter was having troubles. I'm glad he's better, hope he stays that way.
Can't get over Lil Topknot. She's SO pretty on her birthday!
You know I love you always and as always...
Hugsabunch!
Regan DuCasse <mdu24@msn.com>
N. Hollywood, CA USA - Thursday, May 20, 2010 0:04 AM CDT
Dear Alicia, John, Ciara and Hunter,
First of all congratulations on your graduation John!! What a wonderful news! Further, we hope Hunter will recover soon from this infection, we can imagine that to see all the blood in his diapers is scarry. Great to see you with your mum on rollerskates, Ciara! We think of you all,
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Tuesday, May 18, 2010 2:34 PM CDT
HAPPY 14TH BIRTHDAY CIARA!!!! WE HOPE YOU HAVE A WONDERFUL DAY AND GET TO SEE THE FIREWORKS.
We will be keeping Hunter in our thoughts and prayers. Hopefully you will get some answers as to what is going on with him. xoxoxoxoxoxo
Kim, Tom & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net>
Modesto, ca - Friday, May 7, 2010 8:15 PM CDT
Dear Ciara, Happy birthday to you!! We love you and think of you! Hugs to you, your mum and dad and to Hunter!
Love,
Harmen, Hanna, Jan and Jacomien <jacomienwichers@planet.nl>
Haren, The Netherlands - Friday, May 7, 2010 4:31 PM CDT
Alecia...I pray that all of this with Hunter can some how be treated. I pray for all of you and also for your husband to find work after the many hours it takes to become a nurse!!!!
Rae Geske
Bloomington, IL USA - Thursday, May 6, 2010 9:58 AM CDT
I know it's been years, but, I was just remembering my ~Angel~ and along came thoughts of you and how much stronger you are than I. I am lifting you up in prayer...................
Diane Humphrey <dhumphrey002@nc.rr.com>
NC - Thursday, April 15, 2010 11:06 PM CDT
HAPPY EASTER ALICIA, JOHN, HUNTER & CIARA!
Hope you all have a great day.
Many Hugs,
Kim, Tom & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net>
- Sunday, April 4, 2010 11:58 AM CDT
Happy Birthday Hunter!!
We think of you and just wish we would be able to visit your party!
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Saturday, March 27, 2010 1:25 PM CDT
Hope Hunter had a good day! Give him a late birthday hug from me!!!!
Kelly Seibert <rseib44725@bellsouth.net>
hillsborough, NC USA - Friday, March 26, 2010 6:16 PM CDT
Happy Birthday Hunter!!!!!
alyssa....your godmother <sabiemc@aol.com>
chapel Hill, NC USA - Thursday, March 25, 2010 6:19 PM CDT
I don't come by and visit your page enough, I know, but I wanted to come by and tell you Miss Ciara that I am SO glad you are home now! I hope this message finds you feeling lot's better! Hunter, I hope you are doing well also! You guys don't forget to tell your Mommy that tomorrow is St. Patrick's Day and you have to wear green unless you actually want to get pinched like my husband does!
Tabitha sends her love to you both!
Karen and Tabitha West <karenpuddn@comcast.net>
- Tuesday, March 16, 2010 3:14 PM CDT
Ciara ,I am so glad you are feeling better & not in the hospital Please stay well. If you can. But if you have to go back tell your Mom I have her back, Love FranCoombs
frances Coombs <franc26@gmail.com>
Griffin, Ga spalding - Sunday, March 14, 2010 0:20 AM CST
Gald to read that you are all home!
Love,
Harmen &co
Haren, The Netherlands - Tuesday, March 9, 2010 3:05 PM CST
Dear Alicia and family, It is hearbreaking to read about all that Ciara has been going through. You are in the forefront of my mind each and every day. Thinking of you all, Joanne Huff (Mom to Sasha, MPS IIIA)
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Thursday, March 4, 2010 7:47 PM CST
Thank you Alicia for the update. You are in our hearts, Love and hugs from us all,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Wednesday, March 3, 2010 1:58 PM CST
Hope Ciara is feeling a little better.., thinking of you!
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Tuesday, March 2, 2010 3:52 PM CST
God bless ya'll! John and you are amazing parents. When we met you at Duke 6 years ago, I knew you had amazing strength. I will pray for Ciara - I know this is difficult for you.
Camilla Haigler
Gray Court, SC - Monday, March 1, 2010 6:46 PM CST
Thinking of Ciara and you all!!
Love and hugs
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Sunday, February 28, 2010 10:54 AM CST
Thinking of you all, sending many, many prayers for Ciara xxxx
louise lewis (Georgia's mum)
chepstow, UK - Friday, February 26, 2010 1:44 PM CST
Keeping Ciara in my prayers.
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Friday, February 26, 2010 11:58 AM CST
Still praying. I hope she's feeling better.
Mary <miniteasets@mail2world.com>
Worth, IL USA - Thursday, February 25, 2010 10:56 AM CST
Our thoughts & prayers are with your whole family right now. God Bless you all!
Love, The Prado Family - Anthony, Christy, Abriana (4-1/2) & Amos (almost 3)
(Friends of Lori Pedersen)
Christy Prado
Marina, CA - Sunday, February 21, 2010 9:33 AM CST
Love me some Lil Topknot!
I want her well again and safe with her family.
You BET I'll be sending up all the prayers I can and love to you Alicia and John and Hunter.
Hugsabunch!
Regan DuCassse <mdu24@msn.com>
N. Hollywood, CA USA - Friday, February 19, 2010 9:55 PM CST
Keep fighting sweet girl. You are doing so good. I love you!
alyssa....your godmother <sabiemc@aol.com>
chapel Hill, NC USA - Friday, February 19, 2010 7:52 PM CST
My prayers are with you ... as an MPS Grandmom, I know this is very difficult -- wishing for the best for Ciara.
Becky Clarke (Mackenzie's Grandmom) <vabeckyclarke@verizon.net>
Newport News, VA USA - Friday, February 19, 2010 4:44 PM CST
Dear Alicia,
My heart is breaking for Ciara (and you) right now. I will have everyone here praying for her speedy recovery. Please give her lots of Hugs and Kisses from her buddy Julia.
I wanted to let you know that a friend of mine saw some pictures of Ciara on Facebook, and she couldn't believe how much Ciara and Julia look alike!
Our love to all,
The Gray's
Bernadette Gray <bgray@na.ko.com>
Atlanta, GA USA - Thursday, February 18, 2010 2:39 PM CST
Hi Alicia,
Thanks for the kind words on the guestbook.
I want to say thank you for lots of things. You are my veteran heros of this disorder. I am the fng in this battle and I worship your battle experience and bravery and courage in sharing and caring all you do for the rest of us. I can only imagine how emotional it can be to attend the yearly conference. The sad times are there the wealth of knowledge and comfort of being with fellow soldiers and friends in the MPS battle can only be overwhelming.
I applaud you and your family and thank god I have come into contact with you.
Andrew Charest <AZAndyman@yahoo.com>
Tucson, AZ USA - Wednesday, February 10, 2010 9:53 PM CST
Alicia, we just read your update. A BIG, BIG HUG and -LOVE-from all of us, of course especially from Harmen!
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Tuesday, January 26, 2010 3:24 PM CST
I wish you the best. You have a tremendous load and by your entrys you and your husband have been doing a wonderful job. It takes alot of courage and strength to take care of your kids.my granddaughter was just diagnosed last year woth hurlers syndrome mps 1. shes currently in childrens hospital in la. had her bone marrow transplant on jan 6.its really rough right now and we just started. I hope we have the strength like you do...best wishes to you...www.caringbridge.org/visit/babyjaela. love rozanne
Rozanne Garcia <Rozzie66@aol.com>
Torranca, Ca - Thursday, January 21, 2010 8:06 PM CST
you are amazing parents. it's been some time that i've checked in. take care
Linda Sidorski <lsidorski@sbcglobal.net>
- Friday, January 15, 2010 9:15 PM CST
Wishing you all the best in 2010!
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Wednesday, December 30, 2009 2:43 PM CST
Wishing you all a very Merry Christmas!
God bless,love & hugs,Linn,Daniel,Michael & Ariel
The Marrero's <gillinn7@msn.com>
- Saturday, December 19, 2009 9:58 PM CST
Thinking of you always and wishing you a Merry Christmas.
Brenda MY LOVING DAD'S SITE <brurka@shaw.ca>
Edmonton, - Monday, December 14, 2009 11:07 PM CST
I will see you guys in 8 DAYS!!!!!!!!! I can't wait!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
chapel Hill, NC USA - Thursday, December 10, 2009 8:40 PM CST
^Tommy^, we will never forget. You are in our thoughts and hearts!
Love to you and your family,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Wednesday, November 25, 2009 4:16 PM CST
Tommy, six year now you have been in heaven. Not a single day goes by that I don't think about you, talk about you and miss you. I wish you could see all the lives of the children that have been given hope from what you went through. You were so very brave and taught so much. Your mommy misses you so much so please stop by and visit her in the little ways you do. Love you sweet boy.
alyssa....your godmother <sabiemc@aol.com>
chapel Hill, NC USA - Wednesday, November 25, 2009 3:50 PM CST
I'm thinking and praying for your family as I know Tommy's anniversary brings up so many emotions. My daughter's 2 year anniversary was Nov. 14th so I understand what it feels like. Thank God for memories & pictures! Our children are free in Heaven and we will see them one day. May Tommy's memories bring you happiness.
Laura Adams <Lauraha65@nc.rr.com>
Raleigh, NC - Tuesday, November 24, 2009 7:10 PM CST
MPS III B case in any treatment required
please inform to me
VIJAYBALASUBRAMANIAN <SURYAVIJAYADI@SIFY.COM>
TIRUPUR, TN INDIA - Saturday, November 21, 2009 1:00 AM CST
I'm praying everything went well with Hunter.
Kathy <kmayo42@aol.com>
Whitehall, OH USA - Saturday, November 14, 2009 3:15 PM CST
I'm praying that everything went well with Hunter's surgery.
Mary <miniteasets@mail2world.com>
Worth, IL USA - Saturday, November 14, 2009 2:42 PM CST
Alicia,
Don't you just love those oh-so-helpful people who get paid to answer the phones, schedule appointments and treat you like dirt! I've had my share of them too. Unfortunately most of us "special" moms know your frustration.
Praying for you all & sending you hugs.
Hugs~
Casey caringbridge.org/visit/littleandrewspage
P.S. Have you gotten any leads on who stole the wheelchair? I can't imagine what kind of person would do that.
Casey Shaffer <butterflycasey88@aol.com>
Boardman, OH - Thursday, November 12, 2009 5:16 AM CST
You are a hero hugs to Hunter and Ciera, a little angel hug up to Tommy too. How do people understand what we are going through when they have never lived through a moment of it themselves. FYI I am going through a divoice and my husband has classic sociopath look up the book "Why does he do that" online I can't post on our site he will pull the post and use them in court. He also molested both of the children. God Bless you my prayers are with you, N. Esparza
Graci's MOM <gracitransplant@hotmail.com>
- Monday, November 9, 2009 7:03 PM CST
Hello Darlings!
I love the Halloween picture on the homepage. So sorry to hear about Hunter's tooth. I hope he's not in pain, hard to say. But, they are in YOUR excellent hands and you've figured out a lot for them for so long.
I think about you always and you're in my prayers.
Hugsabunch,
Regan DuCasse
NORTH HOLLYWOOD, CA USA - Monday, November 9, 2009 6:50 PM CST
Alicia,
Kudos to you and those costumes!! They're amazing! I will have to get more creative with Sergio's wheelchair next year, you motivated me! LOL Glad to hear that it's all going well. Hope your back is feeling better. I HATE back pain, just a sign of getting older. . . uh um, not that you or I are "older", just saying. . . oh never mind. LOL
Renee
www.caringbridge.com/ny/my2angles <rcurk@aol.com>
- Tuesday, November 3, 2009 6:43 AM CST
You made awesome costumes this year! Love them! And....less than two months until Disney!!! WHOO HOOO!!!!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
chapel Hill, NC USA - Monday, November 2, 2009 5:57 PM CST
Checking in to see how things are going. Did you get the wheelchair back? How are the kids doing? Are they going to a Halloween party? Hope all is well.
Mary <miniteasets@mail2world.com>
Worth, IL USA - Tuesday, October 27, 2009 8:23 AM CDT
something very simlar happened her a little boy had his wheel chair stolen it was on the news you should call the press.
laurarfritz@aol.com
- Monday, October 5, 2009 9:55 AM CDT
I believe that God has a special place in hell for whoever stole your child's wheelchair. And I also know now why I have not been able to let go of my son Ray's wheelchair in the past 2 years since he went to Heaven. When a door slams shut in our face, God opens another one. I think that your Tommy and my Ray want me to give you Ray's wheelchair. Please call me at 910-470-0405 and it is yours. God bless you and your family! sincerely, Paula Baker Bryan
Paula Baker Bryan <pjbryan2227@yahoo.com>
wilmington, nc usa - Monday, October 5, 2009 1:08 AM CDT
What kind of person would steal a wheelchair and a child's wheelchair at that.
Hope you are able to get it back or replaced soon.
Ashlee www.caringbridge.org/visit/ashleedagenais
Ashlee <mwccamper@yahoo.ca>
ON Canada - Friday, October 2, 2009 9:31 AM CDT
new to your site, but wanted to send you (((hugs ))) and prayers on the most difficult of days. will keep you all in my thougths and prayers. GOD BLESS YOU ALL.
www.caringbridge.org/visit/miamarie
sherry and mia <sherrysmith104@yahoo.com>
olympia, wa usa - Saturday, September 26, 2009 9:02 PM CDT
Alicia,
I am devastated to hear one of the wheelchairs has been taken. Are you insured for that? How long will it take to replace? I just feel so awful that one of the kids is without this vital piece of equipment. Is there anything I can do?
Mary <miniteasets@mail2world.com>
Worth, IL USA - Monday, September 21, 2009 2:49 PM CDT
Hi Alicia,
I read this often but don't write. I can't believe our babies would be 10 (Alex would have turned 10 on October 1). I miss him every day. I admire you and John - I know it is still a tough fight for you guys.
Camilla Haigler <camihaig@aol.com>
Gray Court, SC - Sunday, September 20, 2009 6:42 PM CDT
Happy Birthday to the best birthday present your Auntie ever got. I love you Toms.
Aunt Kathy <auntkathy@frontiernet.net>
Sacramento, - Friday, September 18, 2009 1:41 PM CDT
Happy Birthday Tommy!!!! Hard to believe you would have been 10 years old today!!! I wish so badly you were here on earth to celebrate with us. I am sure you will be partying it up in heaven Tommy style! I miss you and love you always!
alyssa....your godmother <sabiemc@aol.com>
chapel Hill, NC USA - Thursday, September 17, 2009 11:17 PM CDT
Hi Alicia,
I just stopped by to read your latest update and I hope that your kids are feeling much better!! What a rough, emotional week that must have been for you all. Just wanted to say hello and let you know I'm thinking of you, Joanne (Mom to Sasha)
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Tuesday, September 8, 2009 7:53 AM CDT
Beautiful vacation photos.
Dawn Laorenza
Foster, RI USA - Wednesday, August 26, 2009 6:08 PM CDT
It's wonderful that you were able to get out and enjoy the last of summer before school started. $18.00 ...I've got to get you to plan my vacation days.
Glad to see you and John looking well and happy.
The bay was so much cooler than the Valley ... a welcome relief from the dry heat.
May the rest of your summer be carefree.
Judy Silvey
Petaluma, Ca USA - Monday, August 24, 2009 12:38 AM CDT
LOVE the pics! And, thank you for letting me phone travel with you =)
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, August 23, 2009 9:30 PM CDT
Thinking about you always and how stressful it is to have your children in pain, but not being able to figure out from what or how to help it. You are amazing in how you're still learning as you go, but manage anyway.
They are the luckiest children to have the courageous, loving and committed parents they do.
Wish I could hug you all in person, but as always give Lil Topknot and Autumn Boy a kiss for me.
Hugsabunch,
Regan DuCasse
N. Hollywood, CA USA - Monday, August 17, 2009 9:32 PM CDT
Alicia, Wanted to say hi. Annabelle and I went on our first vacation to yellowstone park for the first time sense transplant. We camped out for 7 days. She loved it. I read your journal all the time. Thanks for writing. You and John are great parents and I'm so proud of you both. Keep it up. I know how hard you both work and it is not easy taking care of sick children.
Christine and Annabelle
christine barrietua <cbarrietua@yahoo.com www.saveannabelle.org>
boise, ID usa - Saturday, August 15, 2009 11:54 PM CDT
LOL....I LOVE the kids faces with the dancing animals. Too funny! So glad that the kids are feeling better today.
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Saturday, August 15, 2009 10:07 PM CDT
So happy to read about the lab results. I know Ciara's smiles are bringing you great joy! Hoping Hunters teeth pain will ease up, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, August 11, 2009 7:59 PM CDT
Just stopping by to say hi. I hope everything is going okay for you!
Stephanie, Noah and Caroline (HRHS)
www.caringbridge.org/visit/carolinemckaskle
Stephanie, Noah and Caroline McKaskle <noahsmommy73@yahoo.com>
Mehoopany, PA USA - Tuesday, July 21, 2009 10:11 AM CDT
I am taking my kids to the Jelly Belly Factory today. I know you all have been there. I am saying a prayer for each of you today and wish you continued health and happiness to the extent possible. Love .... Stan
Stan Jones <imajones@calweb.com>
Rancho Cordova, CA USA - Monday, July 20, 2009 11:56 AM CDT
So sorry to hear all that the kids are going through right now.We thought we'd leave you some pictures of summer to think about as we often do when our kids are laid up.It's fun to imagine being there even if you can't physically. 
God bless,love & hugs,Linn,Daniel,Michael & Ariel
The Marrero's <gillinn7@msn.com>
- Monday, July 20, 2009 0:20 AM CDT
Wow, anything I can do? Don't be afraid to ask.
Shelley Hartsuyker <hugseveryday@hotmail.com>
Jackson, CA 95642 - Saturday, July 18, 2009 0:21 AM CDT
Sweetie....I would definitely take him to that dentist and sit there on Monday. This pain he is in is absolutely unacceptable. Good luck. Please keep us posted!
charlotte <charlotteellen@mail2mom.com>
auburn, ca - Saturday, July 11, 2009 1:23 PM CDT
Hunter & Ciara,We're just springing by to wish you a wonderful day.So sorry to hear of the seizures,we've just been through a tough bout with them.
God bless,love & hugs,Linn,Daniel & Ariel
The Marrero's <gillinn7@msn.com>
port orchard, wa - Monday, July 6, 2009 9:40 PM CDT
Hey, I can't beleive I just now found your web site!
Kimberly Pruett <sed84@hotmail.com>
Vacaville, CA 95687 - Sunday, July 5, 2009 11:37 AM CDT
Hey guys,Wishing you all a wonderful Fourth Of July!Sorry you are still delaing with all the insurance hassels.
God bless,love & hugs,Linn,Michael,Daniel , Ariel & Private 1st class Bret Marrero
The Marrero's <gillinn7@msn.com>
- Saturday, July 4, 2009 10:49 AM CDT
Oh Alicia, I pray you have gotten the tubes. That is ridiculous! I am so glad that Hunter had his appointment rescheduled. So sorry to read about Ciara's seizures. We have never been to a conference and it doesn't look like we will be attending this on either. With the economy like it is, I cannot imagine spending that kind of money right now! Hoping you all have a great 4th, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Friday, July 3, 2009 7:32 PM CDT
Thanks for visiting our page and thanks for everything else. . . . we are still really newly diagnosed, so I think it will all get better with time . . . .Hope things are going we'll with ya'll :)
Shelly <maddox83@yahoo.com>
Amarilly , tx us - Tuesday, June 30, 2009 7:27 AM CDT
Bennett kids,We just stopped by to wish you and your family a safe & happy Independence Day!
God bless,love & hugs,Linn,Michael,Daniel & Ariel
The Marrero's <gillinn7@msn.com>
port orchard, WA USA - Sunday, June 28, 2009 2:55 PM CDT
Love the website Alicia, you decorating and art skills have succeeded you other days. :-) Hope you find some tubes and things get done soon. Glad the kids are doing well for now.
Love,
Patty and Jesse
http://www.caringbridge.org/md/myjesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Wednesday, June 24, 2009 5:19 AM CDT
Happy Fathers Day John!!!!!!!!
ps-Alicia, love the rugrats...too cute!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, June 21, 2009 0:07 AM CDT
Alicia
I think you called but now I can not find your number in my caller i'd. Call me again. 216-744-8330
michelle fitzpatfrick <mlichniak25@yahoo.com>
cleveland, oh - Monday, June 15, 2009 4:18 PM CDT
I am so sorry to hear all you have to go through with the insurance.We have some of those same difficulties with ours it's like pulling teeth.Prayers headed your way so Hunter can get his teeth fixed.
glitter-graphics.comGod bless,love & hugs,Linn,Daniel & Ariel
The Marrero's <gillinn7@msn.com>
Port Orchard, wa usa - Monday, June 15, 2009 11:11 AM CDT
I remember hearing your story six or seven years ago. It makes me so happy to know that you still have Ciara and Hunter in your lives and that, even with all of the challenges you face, you're still able to do so many fun things as a family. Those memories will last forever. I hope someday there is a cure for Sanfilipo.
Karen
Los Angeles, CA USA - Thursday, June 11, 2009 0:37 AM CDT
Everyone looks so relaxed on your new couches!!!! call me at 216-744-8330
Michelle
Michelle fitzpatrick
cleveland, oh - Wednesday, June 3, 2009 5:22 PM CDT
dad looks right at home on those couches! and so do the kids.that must have been a great prize to win.
becky miller <me147_me@yahoo.com>
buffalo, ny - Sunday, May 31, 2009 6:12 PM CDT
Hunter & Ciara,Wishing you and your family a wonderful summer full of fun.
God bless,love & hugs,Linn,Daniel & Ariel
The Marrero's <gillinn7@msn.com>
Port Orchard, Wa USA - Sunday, May 31, 2009 11:23 AM CDT
Thanks for visiting our page!!! How are you guys doing?!?! We are doing alright :)
Shelly <Maddox83@yahoo.com>
Amarillo, TX US - Thursday, May 28, 2009 11:32 PM CDT
I am sure that this week has stirred up some strong emotions for you and your family. I never met Andrew but fell shattered by his death just the same. Keeping you all in my prayers, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Sunday, May 24, 2009 9:09 PM CDT
Happy MPS Day!!
I know your life has greatly been impacted by this. Thanks for all you do to help find a cure and encourage many others.
Blessings to you and your family!!!
Love,
Susan & Jordan
Jordan's Site <Susan2956@yahoo.com>
Baton Rouge, - Friday, May 15, 2009 1:49 PM CDT
Happy MPS Awareness Day!
You always have the best guestbook stuff...how do you do it?
Thinking of you all.
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA 17033 - Friday, May 15, 2009 1:06 PM CDT
Happy Birthday Ciara!! We hope you all had a wonderful day and that Hunter is feeling well again.
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Wednesday, May 13, 2009 2:32 PM CDT
We just dropped by to check you today.
Jodi and McKayla
Jodi Phelan <jodiphelan@hotmail.com>
Sherwood Park, AB Canada - Wednesday, May 13, 2009 12:06 AM CDT
Happy Mother's Day Alicia. I hope you have a wonderful day and Ciara's party is a blast today! Call me when it is over and let me know how it went!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, May 10, 2009 12:04 AM CDT
Such an exciting birthday!! 13 is great milestone, praying you have many more!!
Lot so love,
Patty and Jesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Friday, May 8, 2009 5:15 AM CDT
Happy Birthday Ciara!!!!!!!!!! Whoo Hooo you are a teenager! That means your mom is old hehehe. I hope you have a wonderful day!
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Thursday, May 7, 2009 6:02 PM CDT
Happy Birthday Ciara. I hope you have a wonderful day!!!!
Love, Anne
Anne Himes <arhimes@msn.com>
Boonsboro, md USA - Thursday, May 7, 2009 5:19 PM CDT
HAPPY BIRTHDAY CIARA!!!!! hope she has a lovely time today and at the park this weekend.
becky m <me147_me@yahoo.com>
buffalo, ny - Thursday, May 7, 2009 1:43 PM CDT
Hello, Bennett family! Just stopping by to say a quick, "HI!" It's been too long since I signed in and left a note. Hopefully Hunter is doing better with his allergies/asthma issues. Take care!
Mieke Embry (mom to Luke, MPS-IIIA) www.caringbridge.org/visit/lukeembry <embry10198@windstream.net>
Moody, AL - Saturday, May 2, 2009 9:02 PM CDT
I am sorry allergies are causing such problems for you. They are doing a number here on us too. Have you tried singular? It worked great for both Hannah and Andrew who both have asthma as well. It really cut down on how much we had to use the inhalers. Good luck.
Love, Anne
Anne Himes <arhimes@msn.com>
Boonsboro, md USA - Thursday, April 30, 2009 8:22 AM CDT
Hi Alicia!
I love the main page pic, it's so sweet!! So sorry to hear the kids are dealing with allergies this week, seems to be all over!! It's so hard when they can't tell you. :-(
I hope that the new medicine shows some improvement in Hunters breathing.
I think about you guys so much, any chance you'll be heading to the Disney conference this year??
Well, take care and kiss those beautiful kids from us!!!
Love, The Haggett's, John, Bren and Zachie
Brenda Haggett, mom to Zachie who has ML II/III <jhrufus@aol.com or www.caringbridge.org/visit/zachie>
Syracuse, NY usa - Wednesday, April 29, 2009 4:41 PM CDT
Sorry you are having such a hard time latly hope you have some good days to come..
Isaiah 40:18-31
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
April Harris & "Angel" Mikayla, Mimmie, Hunter, Noah , and Zachary
www.caringbridge.org/visit/harrisblessings09
www.geocities.com/angelmomfriends5/kayla1.html
April Harris <babymsmom04@yahoo.com>
charlotte, tn - Wednesday, April 29, 2009 3:37 PM CDT
Hunter...I hope you feel better soon buddy. I am so sorry you are having such a hard time. I hope they find something out today that they can FIX!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Tuesday, April 28, 2009 11:23 AM CDT
Keeping you in my thoughts and in my prayer's always
Brenda My Angel Dad DAVE RURKA <brurka@shaw.ca>
Edmonton,Alberta/Canada, - Thursday, April 23, 2009 10:55 AM CDT
Hi Alicia, Hunter, & Ciara!
I haven't been on CB in a long time, but I have recently begun updating my site again as health issues have begun to arise. I'm trying to re-connect with my old CB buddies, as it is nice to have people to talk to who can relate. I hope your family is doing well! Have a wonderful weekend!
www.caringbridge.org/visit/brit
P.S. Happy belated birthday, Alicia! :-)
Brittany Ross <beross84@yahoo.com>
Allentown, PA USA - Friday, April 17, 2009 9:56 PM CDT
Happy Birthday!!!
Misty Luthcke <mluthcke@netzero.com>
- Friday, April 17, 2009 9:48 AM CDT
Keeping your family in my thoughts and prayers!
Lisa
Lynnwood, WA - Wednesday, April 15, 2009 0:26 AM CDT
Happy Easter and Happy Birthday
Anne and Sebastien
www.caringbridge.org/visit/sebastiencairns
Anne Cairns <buzz.cairns@sympatico.ca>
markham, - Sunday, April 12, 2009 4:44 PM CDT
To my sweet godson Tommy...Happy Easter. I just know you are up in heaven running around looking for BIG easter eggs!!! And trying to hold them all at the same time! Goofy boy. I love you and miss you!!!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, April 12, 2009 3:21 PM CDT
Happy birthday Alicia!!
Love and hugs,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Sunday, April 12, 2009 12:50 AM CDT
Happy Easter!!!!!!!!!!!!!!!!!!!!!!!!! I love you guys!!!!!!!!!
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, April 12, 2009 9:49 AM CDT
Wishing you the best birthday ever!!!
Lisa
Lynnwood, WA - Saturday, April 11, 2009 7:50 PM CDT
HAPPY BIRTHDAY to one of the best Moms ever!! Hope you get some time to relax and enjoy your day!
Charlotte <charlotteellen@mail2mom.com>
Auburn, Ca USA - Saturday, April 11, 2009 5:19 PM CDT
Rebecca & Nathan
Rebecca
- Saturday, April 11, 2009 2:38 PM CDT
Happy Birthday!!!! happy Easter also!!
becky miller <me147_me@yahoo.com>
buffalo, ny - Saturday, April 11, 2009 12:36 AM CDT
Hopefully next year we can do Vegas. Have a great day today!!!!!
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Saturday, April 11, 2009 0:49 AM CDT
What a wonderful vacation and birthday!!! So glad you were able to have such a good time that week. It's so nice to see all green, makes me want for Spring to get here faster. It's just starting to turn here and get a wee bit warmer!!
Have a Blessed Easter!
Love to you all,
Patty and Jesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Thursday, April 9, 2009 5:28 AM CDT
Sensational pictures! Love them.
I'm glad you had a great time. Those seem rare for ya.
Kiss the young 'uns for me and thanks for sharing.
Hugsabunch!
Regan DuCasse
N. Hollywood, CA USA - Tuesday, April 7, 2009 2:13 PM CDT
Hi Alicia and John~
I don't get a chance to go to my favorite websites like I used to. I sure enjoyed seeing your lovely pictures. So glad you had a great vacation --I'm sure you both needed a break and a change of scenery. Also glad to hear that it was a super party!! Hugs from across the country!!
Pat, Sal, MIshael and Isaiah <pat.bingham@charter.net>
Whitmore Lake, MI - Saturday, April 4, 2009 4:55 PM CDT
Those are beautiful family pictures, the kids look great.
Glad to hear you had a nice time!
Claudia <pollyesther123@yahoo.com>
- Saturday, April 4, 2009 3:13 PM CDT
So glad to read about your great vacation. It looks like a beautiful place to visit. Hunter's party looked like alot of fun! Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Saturday, April 4, 2009 0:18 AM CDT
=) Makes me so happy to hear you have such a good time
alyssa (your favorite person in the world...beside your kids) <sabiemc@aol.com>
Chapel Hill, NC USA - Friday, April 3, 2009 4:55 PM CDT
What a great picture!! You can see the love in your eyes for your children.
Martha Davis
Garland, Tx USA - Friday, April 3, 2009 11:29 AM CDT
Hope you guys have a GREAT time in Monterey!!!!!!
alyssa (your favorite person in the world...beside your kids) <sabiemc@aol.com>
Chapel Hill, NC USA - Monday, March 30, 2009 0:41 AM CDT
Alicia, I hope you are feeling better as is Hunter. Seriously...you guys need to get a bubble to live in for a while...too many viruses!!!!
alyssa...www.caringbridge.org/ca/bennettboys (my godchildren) <sabiemc@aol.com>
Chapel Hill, NC USA - Friday, March 27, 2009 2:31 PM CDT
Happy Birthday Hunter!! Praying he stays well for his party and that Caira is feeling better. You all need a wellness break!! Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Thursday, March 26, 2009 10:02 PM CDT
Happy Birthday Hunter!! I have been praying for your family and reading your journal for a long time. You are in my thoughts and prayers.
Martha Davis
Garland, Tx USA - Thursday, March 26, 2009 4:24 PM CDT
Poor Ciara....
Love,
Rebecca * Nathan
Rebecca
- Thursday, March 26, 2009 5:25 AM CDT
HAPPY BIRTHDAY HUNTER! I hope that you all feel better soon. Has always your family is in out thoughts and prayers!
Trisha Offenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, Ca - Wednesday, March 25, 2009 11:36 PM CDT
Happy Birthday Hunter!! We hope you have a great day! That means especially that Ciara will be doing well and recovers very soon!
Love to all of you,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Wednesday, March 25, 2009 5:19 PM CDT
HAPPY BIRTHDAY Hunter Baby! Your Auntie LOVES you!!!!
Aunt Kathy
Sacramento, CA - Wednesday, March 25, 2009 1:33 PM CDT
HAPPYBIRTHDAY HUNTER!!!! HOPE HE ENJOYS HIS CUPCAKES AT SCHOOL AND that this weekend he and hi friends have a ball at his party.
becky m
buffalo, ny - Wednesday, March 25, 2009 12:41 AM CDT
It's offically March 25th here on the east coast so HAPPY BIRTHDAY HUNTER!!!! I hope you have a great day and a fun party at school. Eat lots of chocolate and enjoy your special day. Hopefully next year I will be there to celebrate with you! I love you!!!!
Alyssa
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Wednesday, March 25, 2009 1:03 AM CDT
Thinking of you and your family today. You are carried on the love and prayers of many, many people.
Becky Smith <beckysmith62@aol.com>
- Tuesday, March 24, 2009 5:33 AM CDT
Hi there Alicia and the rest of the Bennett Gang! I am so sorry to hear of Ciara's current breathing issues. We too, just had a bad time with one of ours and RSV. Very nasty.
I did want to say that any child with O2 in the house is entitled through the State Insurance system to an oximeter. We have three children with them. Sergio wears his most of the day, Annette has one that she can wear all the time, but she no longer needs too and we have one who has a small hand held device that allows us to spot check his SATS as well as leave it in place for longer readings if necessary. All them were recieved when the child required O2 at home. I would contact your pediatrician and have them request a prior approval for the device through a local durable medical equipment vendor. We use the same one that delivers our O2 supplies. Sorry they stole the first one, but you shouldn't have had to pay for it in the first place. You are entitled to one and just need the doctor to order it and a company to deliver it to you (shouldn't take more than 2 days).
Praying for you all.
God Bless,
Renee Curkendall
www.caringbridge.com/ny/my2angels <rcurk@aol.com>
liverpool, ny - Monday, March 23, 2009 6:04 PM CDT
Continuing to pray for your little girl and your whole family. I know better days are ahead!
Lisa
Lynnwood, WA - Sunday, March 22, 2009 2:00 PM CDT
Praying from S.C for Ciara !! She has had such a rough time , bless her little heart. Thanks for keeping us posted Allysa.
Kathy <jkmm@comporium.net>
Rock Hill , SC - Friday, March 20, 2009 1:23 PM CDT
Ciara, please feel better very soon. My heart just truly breaks reading the most recent posts about your current fight. Joanne, Mom to Sasha
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Friday, March 20, 2009 1:21 PM CDT
Prayers being sent to the Bennett household. Poor, sweet Ciara!
Linda from Tallahassee
- Friday, March 20, 2009 10:37 AM CDT
i hope she feels better soon and that hunter stays healthly. praying for her speedy recovery.
becky m <me147_me@yahoo.com>
buffalo, ny - Friday, March 20, 2009 10:11 AM CDT
Praying Ciara gets better soon! Thinking of you all
Kathy <kmayo42@aol.com>
Whitehall, OH - Friday, March 20, 2009 10:06 AM CDT
Many hugs to all of you...hope they can get her stable and comfortable, so all of you can get some sleep.
Theresa
- Friday, March 20, 2009 2:07 AM CDT
Just to let you know that we are keeping you all in our prayers. Ciarra hope and pray that you will soon be well again. Hugs to Ciarra and Hunter. Alicia you are amazing.Take care God bless
Trish Dennis <prand1@optusnet.com.au>
Sydney, NSW Australia - Friday, March 20, 2009 1:25 AM CDT
poor ciara, fevers seem to be going around. i work with people with disablities, they are all in ther 20's and non verbal. this one boy is a senior in hs and they must think we don't care or are mean cuase the boy would get fevers at school and we'd keep him home and take his temp send him next day and poof fever back. he actually went a week without one and the poof it came back. he is fine now.
hope everyone is getting healthly.
becky miller <me147_me@yahoo.com>
buffalo, ny - Wednesday, March 18, 2009 6:20 PM CDT
Kim & Scotty MPS II <cottons@earthlink.net>
Modesto, ca - Tuesday, March 17, 2009 8:58 PM CDT
Oh yeah....THREE MORE MONTHS and I am back out on the WEST COAST!!!!!!!!!! Tell my kiddo's to stay healthy for me!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Tuesday, March 17, 2009 7:15 PM CDT
Happy St. Patty's day ya lush! LOL....actually you probably drink less than me!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Tuesday, March 17, 2009 7:15 PM CDT
Praying Ciara starts to feeling better soon. Happy St. Patrick's Day!
Linda from Tallahassee
- Tuesday, March 17, 2009 1:40 PM CDT
Hugs,
Rebecca & Nathan MPSII
Rebecca
- Tuesday, March 17, 2009 3:05 AM CDT
I'm a godmother, that's a great thing to be, a godmother. She calls me god for short, that's cute, I taught her that. - Ellen DeGeneres
Hehe....
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Monday, March 16, 2009 9:51 PM CDT
Geez Alicia, I don't know how you do it!! Get yourself well, and give those kids hugs from Jesse and I. We love you, but you know that since we talk often, LOL! Hopefully you can find the right combination for Hunter's headaches!! It took a little while to figure Jesse's out, but keep doing trial and error and you find the right combination of stuff to do or eliminate!!
Love,
Patty and Jesse
PattyT <wordinedge@aol.com>
Balto, MD USA - Sunday, March 15, 2009 10:08 AM CDT
Praying that the sweet princess finds some answers soon for her pain. Poor doll....I hate to hear her crying on the phone. I HATE MPS
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Sunday, March 15, 2009 1:30 AM CDT
Just wanted to let you know I am thinking of you ... praying for comfort for Ciara and Hunter. ((((HUGZZZ)))
Stacey and Lucas MPSIIIB
http://www.caringbridge.org/visit/hopeforlucas
Stacey Montgomery <lewNstacey@yahoo.com>
Cedar Rapids, IA - Saturday, March 14, 2009 8:27 PM CDT
Ok...you can't go to Disney World right after I move back to the west coast! Come now =) And you are right...2009 has sucked, I just hope to be moved out there by July so I can help you!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Friday, March 13, 2009 5:43 PM CDT
I just got the biggest lump in my throat. Paying for the kid's cemetery plots right now?! I wasn't prepared to read that...
Your care and love for your children makes me respect you and have much hope.
Especially that so many people care about you and what a small world of the loving and kind it really is.
Kiss Lil Topknot and your boy with the beautiful autumn hair for me.
Take care and...hugsabunch!
Regan DuCasse <mdu24@msn.com>
N. Hollywood, CA USA - Friday, March 13, 2009 0:36 AM CDT
Just dropping by to say you are all in my prayers, so sorry to hear that Ciara is not feeling well:( poor baby, Big hugs to you all
Therese, Danielle & ^^Sara^^ <trid2b4@sbcglobal.net>
Morris, IL USA - Wednesday, March 11, 2009 9:29 AM CDT
Oh no love and hugs and every best wish that everyone is better soon love Laura and Will xxxxxxxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Thursday, March 5, 2009 2:47 PM CST
Sorry to see the kids are not feeling well. I hope Ciara is on the road to recovery. I hope chocolate is not one of the things contributing to Hunter's migraines since he loves it so much. I will continue to keep all of you in my prayers.
Mary <miniteasets@mail2world.com>
Worth, IL USA - Thursday, March 5, 2009 1:56 PM CST
Thanks for the Amber alert! Praying that Hunter and Ciara get things straightened out and have some less exciting times ahead of them. Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, March 3, 2009 12:48 AM CST
Hope Ciara feels better soon..poor thing!
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Monday, March 2, 2009 7:14 PM CST
Hoping Ciara is feeling better! Just wanted to drop by and let you know I was thinking about you!
Kathy <kmayo42@aol.com>
Whitehall, OH - Saturday, February 28, 2009 10:11 AM CST
So sory to hear about all the seizures while Ciara is not feeling well! Praying she gets past all of this soon! (((HUGS)) and (((PRAYERS)))
Love,
Patty and Jesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Saturday, February 28, 2009 7:04 AM CST
Always, always, you are in my heart.
And yes, I will be praying for Lil Topknot!
Hugsabunch,
Regan DuCasse
N. Hollywood, CA USA - Friday, February 27, 2009 10:48 PM CST
Thinking of you all this morning....hoping Ciara is doing lots better now.
Have a great day!
Karen and Tabby <karenpuddn@comcast.net>
- Friday, February 27, 2009 8:40 AM CST
Sorry, I just saw your update, so glad to read that Caira is o.k. Keeping you all in my pryaers, Misty
Misty Luthcke <mluthcke@netzero.com>
- Wednesday, February 25, 2009 12:17 AM CST
so glad its just a bug. hope you were able to get some rest. hoping everyone gets better and stays better.
becky miller <me147_me@yahoo.com>
buffalo, ny - Tuesday, February 24, 2009 12:18 AM CST
Keeping prayers going here too for your sweet girl!!
XOXOXO
Patty and Jesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Tuesday, February 24, 2009 8:14 AM CST
Praying for the little princess...
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Monday, February 23, 2009 11:51 PM CST
Sending lots of prayers. We love you all.
Shaun,Heather,Zach <shaunkidsmom@yahoo.com>
KlamathFalls, or us - Monday, February 23, 2009 11:46 PM CST
Thanks for the Valentines Day card for Caylin. Hope things are looking better for you. Caylin will be turning 12 on wednesday. Send me the kids birthdays I would like to keep a journal. Did your friend get the high chair together? I sure hope so.
Marti Raines <smkid@pldi.net>
- Sunday, February 22, 2009 9:09 PM CST
Continuing to keep your kids and whole family in my thoughts and prayers each and every day.
Lisa
Lynnwood, WA - Sunday, February 22, 2009 7:25 PM CST
Alicia we are so sorry about your tooth aches,virus etc...
Glad things are starting to look up!I love the new pictures of you guys with Hunter and Ciara
take care
Anne and Sebastien
www.caringbridge.org/visit/sebastiencairns
Anne Cairns
markham, ont Canada - Saturday, February 21, 2009 12:06 AM CST
Alicia,
So glad you stopped by our site! Wishing you a very sleep-filled and uneventful weekend:)
Lisa
Lisa Muller <lmuller612@columbus.rr.com>
Marysville, OH USA - Saturday, February 21, 2009 10:31 AM CST
So sorry that you have been sick. I hope that you are able to enjoy the weekend. Thanks for the sweet card for WIll. With all you have going on finding the time to be so thoughtful, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Friday, February 20, 2009 11:00 PM CST
Praying that you've all had a good week so far and that you've got something fun planned for the weekend!
Lisa
Lynnwood, WA - Thursday, February 19, 2009 6:57 PM CST
Hello Darlings!
So sorry to hear that you've been sick Alicia. Tooth issues can be VERY serious, but as long as you have it taken care of now, I'm relieved you'll be okay.
I suppose the flu season is tough and scary for you and the little folks, and I'm glad you and Hunter are through that too.
Wow, I feel like I've been away for SO long! I had major surgery on both legs back in late Oct. It's STILL a trial dealing with the nerve pain, but I get around pretty good, even at the gym again.
I had to have some experience with wheelchairs, parking placards, handicapped bathroom stalls and other forms of accommodation for wheelchair users. Which makes me appreciate even more how strong you are and compassionate.
All in all, people are SO kind and helpful, and the best sign that a caring community helps the healing and gives hope.
You and John, Lil Topknot and Autumn Boy with that beautifully colored hair are always in my thoughts.
Sorry to have been away, I love reading the messages from the other folks. It's good to catch up.
Hugsabunch, always!
Love,
Regan DuCasse <mdu24@msn.com>
N. Hollywood, CA USA - Monday, February 16, 2009 11:40 AM CST
Happy Belated Valentine Day!
Love,
Patty and Jesse
PattyT <wordinedge@aol.com>
Balto, MD USA - Sunday, February 15, 2009 6:01 AM CST
Happy Belated Valentine Day!
Love,
Patty and Jesse
Pattyt <wordinedge@aol.com>
Balto, MD USA - Sunday, February 15, 2009 6:00 AM CST
HAPPY VALENTINES DAY!!!!!!!!
(((HUGS)))
LOVE YA......Nichole and Family
www.caringbridge.org/visit/kalebrichardson
Nichole Richardson <paposmom@yahoo.com>
LaPine, OR. United States - Saturday, February 14, 2009 11:23 PM CST
Thanks for keeping in touch! Hope you all had a nice Valentine's Day! Much love to Hunter & Ciara,
Karen Lindsey Hannah Efird <efirds4mps@ctc.net (and) www.caringbridge.org/nc/lindseysmpsjourney>
albemarle, nc usa - Saturday, February 14, 2009 8:42 PM CST
Happy Valentine's Day!!!!!!!
Hugges and Kisses,
Janeen, Andrew and Peyton
www.caringbridge.org/visit/andrew1
Janeen Eisler <Jstarr1031@yahoo.com>
Nanuet, NY Rockland - Saturday, February 14, 2009 8:38 PM CST
sorry to hear you've been sick glad you better. glad the kids have been doing well...happy valentines day!!!
becky miller <me147_me@yahoo.com>
buffalo, ny - Saturday, February 14, 2009 3:07 PM CST
As always, thinking about you guys and sending our wishes for a very Happy Valentine’s Day!
Hugs & Kisses from Hershey ~
Donna Kay and Tyler
http://www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, pa us - Saturday, February 14, 2009 2:51 PM CST
Happy Valentine's Day!!!
Lisa
Lynnwood, WA - Saturday, February 14, 2009 2:01 PM CST
Um, you forgot to write WHY you bought the sled...and decided to take pictures...to rub it in a some certain someone's face. Heh...Anyway...
HAPPY VALENTINES DAY....I love you guys!!!!!
Alyssa
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Saturday, February 14, 2009 1:19 PM CST
Wanted to stop by and wish you a Happy Valentines Day! Glad to see you are feeling better!
Kathy <kmayo42@aol.com>
Whitehall, OH - Saturday, February 14, 2009 1:09 PM CST
Thanks for Nathan's card. (had to LOVE that card, I love frogs)
Hugs,
Rebecca & Nathan
Rebecca
- Saturday, February 14, 2009 11:57 AM CST
HAPPY VALENTINES DAY! I am glad to hear that everything is going better for you all. Thank you so much for that lovely card.
Trisha OFfenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, ca - Saturday, February 14, 2009 10:04 AM CST
Happy Valentine's day!!
Love to you ALL!!
Harmen & co
Haren, The Netherlands - Saturday, February 14, 2009 2:54 AM CST
Kim & Scotty  MPS II <cottons@earthlink.net>
Modesto, ca - Friday, February 13, 2009 9:58 PM CST
hoping no news is good news....
becky miller <me147_me@yahoo.com>
buffalo, ny - Thursday, February 12, 2009 7:52 PM CST
Continuing to keep your family in my thoughts and prayers each and every day!!!
Lisa
Lynnwood, WA - Wednesday, February 11, 2009 7:49 PM CST
Continuing to pray for your amazing kids and your whole family.
Lisa
Lynnwood, WA - Friday, February 6, 2009 11:52 PM CST
Alicia, hope you are feeling better today! No more getting sick!
alyssa...www.caringbridge.org/ca/bennettboys (my godchildren) <sabiemc@aol.com>
Chapel Hill, NC USA - Wednesday, February 4, 2009 12:51 AM CST
praying
kristen m
- Tuesday, February 3, 2009 11:59 AM CST
Hello to another special family from Sarah Smith's Spot!!
I was here a few years ago, but lost it in my favorites so I lost contact.
Please know I have your very sweet kids in my prayers. You are a true inspiration when some of us sweat the small stuff in life.
colleen
colleen fraser <irishgalmi@comcast.net>
Muskegon, MI USA - Monday, February 2, 2009 9:17 PM CST
Came over from Sarah Smith's page, thinking of your 3 children and praying for you.
Wendy Krueth <krueth@blackduck.net>
Hines, MN USA - Monday, February 2, 2009 4:57 PM CST
I visit your page regularly but have never signed your guest book. Your an amazing mother and an inspiration to all of us!
Stephanie Wilson <slwilson0511@hotmail.com>
AR - Monday, February 2, 2009 2:08 PM CST
One more "ant" from the Sarah Smith Spot Trail - you are an amazing family - praying for all your needs.
Mary H <mch@herzogcrebs.com>
St. Louis, MO - Monday, February 2, 2009 12:40 AM CST
Following the trail of ants from Sarah Smith's Spot. *grin* Ciara and Hunter are absolutely beautiful...I've not had the opportunity to read about Tommy yet, but I promise I will be spending some time reading your journal archives!
Cara
- Monday, February 2, 2009 12:36 AM CST
I have been following your story for a long time but rarely sign your guestbook. Forgive me. Remembering your sweet Tommy and continuing my prayers for Hunter and Ciara.
Christy Smith
Charlotte, NC - Monday, February 2, 2009 9:52 AM CST
Long time follower, but not a frequent signer. Shame on me.
I have always admired how you have handled all that is on your plate. You are inspirational to so many of us out here.
I will try to do better at signing the guestbook.
www.earleydays.blogspot.com
Mamasita
- Monday, February 2, 2009 8:50 AM CST
I've visited here before, and was also reminded via SS's spot! Ciara and Hunter are amazing! I'm a redhead too . . . hehe. Hugs and prayers
Nikki <pookielocks@ymail.com>
columbus, oh - Sunday, February 1, 2009 10:29 PM CST
I just learned of your site through Sarah Smith's Spot. I'm sure I'll be spending some time here learning of your family's story and will continue to check in on you. Sending hugs and prayers to you from Texas.
Sue Ellen
Mesquite, TX USA - Sunday, February 1, 2009 8:22 PM CST
Just wanted to let you know even though I don't sign in I do still check up on you. Just picked today to de-lurk after reading Sarah Smith's site.
Kathy <kmayo42@aol.com>
Whitehall, OH - Sunday, February 1, 2009 7:46 PM CST
Hi, I'm coming from Sarah Smith's too, and sending your beautiful children lots of love and sunshine from Italy!(Even if it's raining right now, but that's not the point) ;) :)
Olivia <olivia.severini@aliceposta.it>
Rome, Italy - Sunday, February 1, 2009 5:42 PM CST
Coming here from Sarah Smith's site. Hope you all have a wonderful Sunday; thinking about you all. Love the photos of the kids!
Amanda Jennings <amanda@southpawcentral.com>
Avondale, az usa - Sunday, February 1, 2009 1:33 PM CST
I'm coming here from Sarah Smith's site... isn't it wonderful that Becky linked us all? What beautiful children you have ... they look so happy in all of the pictures! I'll be praying for good days for them.. many, many good days...
Pam D. <p_dought@bellsouth.net>
Powder Springs, GA USA - Saturday, January 31, 2009 9:01 PM CST
Continuing to keep your family in my thoughts and prayers.
Lisa
Lynnwood, WA - Saturday, January 31, 2009 5:05 PM CST
Hello everyone! I came here from Sarah Smith's site and I thought I'd sign the guestbook! You are all in my thoughts and prayers!
Love, Sammi www.caringbridge.org/mi/sammijean
Sammi Robertson <NeuroGirl716@hotmail.com>
Westland, Michigan United States - Saturday, January 31, 2009 4:33 PM CST
Our daughter was also transplanted at Duke. Sending love and happy wishes from North Carolina!
caringbridge.org/nc/sarahsmith
Becky Smith <beckysmith62@aol.com>
Smithfield, NC - Saturday, January 31, 2009 10:25 AM CST
Thinking of you, and sending hugs and kisses from Hershey.
Donna Kay and Tyler
www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, pa us - Thursday, January 29, 2009 11:36 AM CST
Praying for you all.
http://www.freewebs.com/prayerbears
http://www.colesfoundation.com
http://heatherrain.livejournal.com
Jennifer <texasprayerbear@yahoo.com>
Bridgeport, Texas - Tuesday, January 27, 2009 8:20 PM CST
Alicia you need like a week of sleep....7 days in a row..just sleep. I have no idea how you do it. I am 3 hours ahead and you are up when I go to bed and up when I wake up! You are like a....ummm...nope, no animals stay up all the time. You are superhuman! But, we already knew that =)
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
Chapel Hill, NC USA - Wednesday, January 21, 2009 10:23 PM CST
Hope Ciara is Ok and the seizures do NOT retrurn! much love Laura and Will xxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Sunday, January 18, 2009 1:57 PM CST
I am keeping the kids in my prayers for a healthy 2009. It is a very cold day her in S.C. ( low was 11 degrees this a.m. )
Take care....love and prayers across the miles, Kathy
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Saturday, January 17, 2009 3:51 PM CST
So happy for you that things have been quiet, you deserve a break! I read that the premiere was wonderful! I appreciate all that you do to help raise awareness for our kids, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Thursday, January 15, 2009 10:43 AM CST
We just dropped by to check you today.
Jodi and McKayla
Jodi Phelan <jodiphelan@hotmail.com>
Sherwood Park, AB Canada - Thursday, January 8, 2009 0:26 AM CST
Hey...your page display looks like the video game people...lol
alyssa...www.caringbridge.org/ca/bennettboys (my godchildren) <sabiemc@aol.com>
Chapel Hill, NC USA - Tuesday, January 6, 2009 5:21 PM CST
MyHotComments
kathy and angel katilynn preston <katilynnsmom@yahoo.com>
tomahawk, k USA - Tuesday, January 6, 2009 4:36 PM CST
Happy New Year! Praying that those seizures will STOP ! Maybe you can get some help from somewhere for the van. I too have looked at them and they are outrageously priced. Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Monday, January 5, 2009 5:44 PM CST
A great resource - many thanks!
Mike <Mike>
ilXouCpbEG, pXgzJFMMtFQqJKQv jfjwXpAcwsTwWXRUi - Monday, January 5, 2009 1:03 PM CST
Hi
I'm so sorry it has been so long since I have spoken to you. Call me at 216.744.8330.
Michelle
Michelle Fitzpatrick <mfitzpatrick@armstrong.com>
oh - Friday, January 2, 2009 8:59 AM CST
Wishing you all a happy & healthy new year! Thank you for our Christmas card, it was lovely.Lots of love & a huge hugs for Ciara & Hunter. Hope Ciara likes her 'lullaby soundspa'!
Love from Louise & Georgia xxxxxxx
louise lewis
chepstow, uk uk - Friday, January 2, 2009 6:38 AM CST
Happy New Year to the most beautiful family! Wisking you all the best for 2009!
Karen West <karenpuddn@comcast.net>
- Thursday, January 1, 2009 9:22 PM CST
Happy New Year to my most favoriteist people EVER!!! I pray for a healthy happy new year for you all =) Love you
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Thursday, January 1, 2009 11:24 AM CST
HAPPY NEW YEAR!!!
www.caringbridge.org/ca/coltonmeyer
laura
ca - Wednesday, December 31, 2008 9:59 PM CST
Hey Bennett Family,
Just stopping in to wish you all a great new year! You have been though so much and yet your joy and love for life remains.
What an inspiration you are to me and I'm sure MANY others.
Praying for another good year for the kids.
So nice to know you!
Love,
Susan & Jordan
Jordan's site <Susan2956@yahoo.com>
Baton Rouge, - Wednesday, December 31, 2008 7:39 PM CST
Hoping 2009 brings only good things to your family.
Happy New Year,
Nichole
www.caringbridge.org/visit/benjaminrobinson
Nichole Robinson <mocha79@bendbroadband.com>
Bend, OR USA - Wednesday, December 31, 2008 3:04 PM CST
Thanks for your lovely wishes and the card too! Many many blessings in 2009 and a happy and healthy year for you all as well.
Big hugs
Elizabeth, Peter, Daniel, Sam and Anna
Elizabeth Schuepbach <peschuepbach@freesurf.ch>
Bern, Switzerland - Wednesday, December 31, 2008 2:14 PM CST
The Chosen Ones
Not just any child could walk this uphill road.
These children walk it everyday, carrying a load.
They show us heights of courage we may never reach.
They show us what it is to fight a fight we cannot teach.
We stand beside them knowing there is no guarantee.
Except the one we started with, to love them endlessly.
They are the special chosen ones, God knew it from the start.
He picked each child for mps by measuring their heart.
The ones that measured biggest would someday face a test.
The challenge is to understand, God loves them more not less.
He's using them to move our hearts closer to his own.
Teaching us to trust his plan and fear not the unknown.
For God can move a mountain and part the raging sea.
He wants our struggles offered up and given forth to Thee.
He smiles upon the chosen ones before they're even born
And blesses them with courage to walk through any storm.
His love for them surpasses ours and cannot be denied.
For in the dark of suffering, his light will not subside.
No matter what the outcome, there is the greatest peace.
In knowing deep inside their hearts, his love will never cease.
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Friday, December 26, 2008 5:18 PM CST
I am so sorry to know about Hunter and Ciara recent health issues. I will be praying for you all. Merry Christmas, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Thursday, December 25, 2008 11:15 PM CST
We wish you a Merry Christmas!
We wish you a Merry Christmas!
We wish you a Merry Christmas…
And a Happy New Year!
Cheers!
Hugs and Kisses from Hershey,
The Langan Family
http://www.caringbridge.org/visit/tylerlangan
I wish I knew how to do all the fancy stuff that everyone leaves in your guestbook! Sorry ours is so dull, but the thoughts and prayers we are sending you are just the same!
Donna Kay Langan <langandk@hotmail.com>
Langan, PA USA - Thursday, December 25, 2008 9:34 PM CST
Merry Christmas and the best wishes for the new year!
Thinking of you all,
Love,
Harmen, Hanna, Jan and Jacomien
Haren, The Netherlands - Thursday, December 25, 2008 4:46 PM CST
Waiting on the children to wake up... Have a BLESSED Christmas!
Love,
Judy
Lisa's site
- Thursday, December 25, 2008 4:15 AM CST
Happy holidays!
Sjon (dad to Kariem)
the Netherlands - Thursday, December 25, 2008 2:10 AM CST
Merry Christmas to my most favorite people EVER!!! I miss you guys and love you!!!!
alyssa <sabiemc@aol.com>
Chapel Hill, NC USA - Thursday, December 25, 2008 0:02 AM CST
Kim & Scotty MPS II  <cottons@earthlink.net>
Modesto, CA - Wednesday, December 24, 2008 10:05 PM CST
As we anticipate our Savior’s birthday I wanted to let you know how much we appreciate your stopping by Lisa's site! Praying for your precious children!
Merry Christmas!
Blessings,
Judy
Lisa's site
- Wednesday, December 24, 2008 7:15 PM CST
MERRY CHRISTMAS BENNETT FAMILY~~
Emma and I would like to wish you all a Very Merry Christmas and nothing but much good health and happiness in 2009!!
Happy Holidays~~Becky and Emma MPS1
www.caringbridge.org/canada/prettygirl
Becky and Emma Hardman <bbjhardman@sympatico.ca>
Hanover, Ontario Canada - Wednesday, December 24, 2008 4:50 PM CST
Wishing you a very Merry Christmas and a peaceful 2009!
Praying for you guys!
Love Geraldine and Connor
www.caringbridge.org/visit/connorv
Geraldine Vanderveen <vanderveenger@hotmail.com>
- Wednesday, December 24, 2008 11:19 AM CST
OMG I can't believe what has all went on in your life. It's so heart breaking to see that Hunter has been screaming and in pain. I know how it feels also. Been there numerous times with Nathan and leave the hospital with no answers,just more meds.
Hope you get to go home and everyone is healthy and feeling better. (sorry to hear about the breakin) alot of people out there with NO heart.
Sending prayers your way.
Rebecca & Nathan
Rebecca
- Wednesday, December 24, 2008 7:20 AM CST
|
HUNTER!
Hunter! :) We hate seeing you sick little guy!
MPS II <cottons@earthlink.net>
MPS II <cottons@earthlink.net>