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 12 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 started her on Tripleptal and it seems to be working. Hunter is 10 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

Wednesday, December 3, 2008 10:50 AM CST

I hope everybody had a wonderful Thanksgiving. Things here have been going well. Ciara had a seizure a week ago which means that she went three weeks between seizures so that was pretty good. The bad part was that for about 3 days after the seizure she slept pretty much all day and all night, this one really wiped her out. But she is back to her old self again and happy so that is wonderful. Hunter has been doing very well also but he is having a hard time holding his head up, like his neck isn't strong enough anymore, and he really hates it and cries. So I have been having to roll a towel or blanket to put behind his neck when he is in the car but he does pretty well in his big wheelchair which is the one he takes to school. He really can't hold his own sippy cup anymore either, he tries and can for about a minute, but that's it. Over the weekend John and his brother built a deck and a wheelchair ramp on the front porch so now I can bring Hunter's huge wheelchair into the house. He wasn't very happy when I would put him in a freezing cold wheelchair in the morning so I am sure he really appreciates the ramp. I guess that's it for now. Thank you all for checking in on us and have a wonderful week!

I know every year people ask us what the kids would like for Christmas but this year I am asking you not to send us anything. But instead there is another MPS family who is in great need of help. I am not going to post their information on here but if you would like to help this family just send me an email with MPS FAMILY IN NEED in the subject line and I will send you their address and what they need.

I also need cookie recipes. One of our fire fighters, who is in the Army, is being sent to Afganistan in two weeks. His wife asked us to make cookies to send over to him and I really need some new cookie recipes so please post them in our guestbook, I need all the help I can get!

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