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 11 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 6 years and we just started her on Tripleptal and it seems to be working. Hunter is 9 years old and he was diagnosed at the age of 3. Hunter is having a lot of trouble walking lately because he walks on his tip toes and his feet are turning inward, which causes him to fall down a lot. Recently he has started choking when he eats so we watch him closely, but he still feeds himself and he loves chocolate. 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.helpachild.net.

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

Monday, June 23, 2008 3:48 PM CDT

We have had a very good week. Ciara and Hunter have been doing very well and have been happy but Ciara has had some issues. Friday night she started looking like she was going to have a seizure soon and then all day and night Saturday she was constantly moving and slumped to the left and her eyes didn't look normal so we knew there was some sort of seizure activity going on but not a “normal” seizure. Saturday night I gave her a dose of her Haldol to see if it would help and it did calm her down for a while and she was able to rest. Around 7:00 yesterday morning she had a fairly small seizure and then seemed OK until about 1:30 in the afternoon. I was just about to put the kids in the car to do to a bridal shower when Ciara had a very big seizure. For the rest of the day she was like a little rag doll but today she is back to her old self, alert and “talking” all morning.

Hugs To All,
and ^^Angel^^

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Hospital Information:

Patient Room: We Are Home!

The Bennett Family
P.O. Box 1423
Ione, CA 95640

Links:

http://www.amazon.com/gp/registry/wishlist/2DDY60N8XA4BO   BIRTHDAY & HOLIDAY WISH LIST
http://www.helpachild.net   BENNETT CHILDREN'S FOUNDATION
http://www.picturetrail.com/gallery/view?p=6&uid=721717&   PREVIOUS PICTURES OF THE KIDS