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Bennett Children's Journal




Welcome to the Bennett Children's Web Page. It has been provided to keep people updated about Ciara and Hunter's progress. Tommy had 3 Umbilical Cord Blood Transplants at Duke Medical Center, but he passed away November 25, 2003. Ciara, Hunter and Tommy have Sanfilippo Syndrome which is also called MPS-IIIA. Sanfilippo children usually don't live past the age of 10-13 years old. Ciara is 19 years old and she was diagnosed at the age of 4 She can't walk on her own anymore so she is in a wheelchair. She has a feeding tube because she was aspirating and getting pneumonias. Ciara has been having seizures for the past 11 years and we started her on Tripleptal and it seems to be working. Hunter was 16 years old when he passed away 0n January 7, 2015 and he was diagnosed at the age of 3. Hunter could not walk anymore and he had a feeding tube. Tommy was diagosed at the age of 2 and that is when we heard of the stem cell transplants at Duke University. Tommy's first and second transplants didn't work because his immune system was too strong, but the third transplant was successful, he grew 100% donor cells. But, he caught the Adeno Virus which he couldn't fight off and he became an angel on November 25, 2003. For more information about our family you can visit our website at www.facebook.com/mps3mom.










We have a couple of on-going fundraisers that I wanted to let you all know about. We are still selling magazines so please stop by and order a new subscription or renew an old one at MAGAZINE FUNDRAISER. You can also help us out just by shopping on-line. Just stop by IGIVE.COM and sign up using the Bennett Children�s Fund as your charity and we will receive a percentage of everything you purchase on-line!




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Journal

Tuesday, April 10, 2018 9:35 PM CDT

Hello Everybody!

I don't know if anybody still reads this page but I am going to post a little update anyway. Ciara is still plugging along, knock on wood. She will be 22 years old on May 7 so if you would like to send her a birthday card, she would love it! You can mail it to Ciara Bennett, 408 Castle Oaks Drive, Ione CA 95640.

A year ago we bought a boat which Ciara really loves. She loves to get out in the sunshine and to feel the wind and water. Some of you may remember our friend Alyssa, she was Tommy's Best Buddy when we were at Duke. Alyssa got married last May and Ciara and I were in the wedding which was wonderful. We also did a 3 week cross country road trip. It started on our drive to the wedding in North Carolina, then we went to Yellowstone, Grand Tetons, Glacier National Park and then headed home and we had a great time. We are still heartbroken after losing Hunter. It's been 3 years since we lost him but it still feels like it was yesterday. At least our boys are together now. I will try to update again soon, probably over the summer. Thank you for checking in on us and don't forget to sign the guestbook!

Alicia

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Hospital Information:

Patient Room: We Are Home!

Bennett Family
408 Castle Oaks Drive
Ione, CA 95640

Links:

  
http://www.picturetrail.com/mps3mom   RECENT PICTURES OF THE KIDS
http://www.picturetrail.com/gallery/view?p=6&uid=721717&   TRANSPLANT PICTURES OF THE KIDS


 
 

E-mail Author: mps3mom@hotmail.com

 
 

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Duke Pediatric Bone Marrow and Stem Cell Transplant Program

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