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 13 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 11 years old and he was diagnosed at the age of 3. Hunter can not walk anymore and can't eat much, mostly things like pudding, mashed potatoes, etc and he has 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.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

Sunday, June 28, 2009 3:14 PM CDT

We finally have a date set for Hunter's dental surgery, July 14! So having solved that issue, all I can say is that we STILL don't have any feeding tubes for the kids. Friday I was told that one shipment came it but they gave them to other patients and the next shipment will be in a week or two. So, all I can say to that is Lord help the people that I get on the phone tomorrow when I start making my calls because I am calling everything from bottom to top at Kaiser and Apria and I will call the media too. I have one feeding tube left for the kids to share and it is time to place another monthly order and I haven't even received last months order. You all know what happens when people mess with my babies so tomorrow isn't going to be pretty and I don't care who I have to yell at, tomorrow I will get one tubes!

Ciara had a seizure on Thursday and another one on Friday but yesterday she had a wonderful day and was very happy and alert. John was supposed to do some overnight hauls this week but the company kept canceling them, I guess there isn't enough work right now so when he came home again yesterday I wasn't too surprised. We decided to put the kids in the car and drove around for a while but it was too hot to do much else with them, it was 104 degrees. We ended up in Elk Grove so we went out to dinner with John's sister and had a great time. Hunter had an appointment with the GI doctor this week and the doctor said that he didn't think Hunter has migraines and I honestly don't know if he does or not, I never fully believed that diagnosis. So this doctor said that I should start to ween him off of this migraine med so for the next three nights I lowered his dose. And for the next three days he was crying and fussing so last night I gave him his normal dose to see if it made a difference so I will see how he does today. I guess that's about all for now. We still would love to go to the MPS Disney Conference but as time goes on, it doesn't look like we will be able to make it. I just don't see us having the $3000 we need for the trip which makes me really sad, we have missed the conference for the last four years.

Hugs To All,
and ^^Angel^^

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Hospital Information:

Patient Room: We Are Home!

P.O. Box 1423
Ione, CA 95640

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http://www.picturetrail.com/mps3mom   RECENT PICTURES OF THE KIDS
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