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

Wednesday, August 20, 2008 8:22 PM CDT

Sorry I haven’t updated since before we went camping. We had a great time at Lake Tahoe with our friends. Of course before I headed off to Tahoe my car wouldn’t start, the battery was dead. John jumped it for me and then the kids and I were off to Lake Tahoe. John had school that day so he was going to meet us up there late that night. Ciara had a seizure right before we left the house so I was praying that she wouldn’t have any more and thankfully she didn’t. When we got to the campground our friends were out to lunch so I got Ciara and Hunter out of the car and started getting everything out of my car and setting up camp. When our friends got back they helped me set up the tent, which was pretty darn funny to watch I must say, none of us had any idea what we were doing. Once the tent was up I pumped up the air mattresses and put the kids in there to lay down and relax for a while after the long drive. Not long after that our other friends arrived so we got them set up and then it was time for dinner. After dinner it started to get dark which meant that John would be there soon so all of the other kids in our group changed into their camouflage clothes, grabbed their Nerf guns and waited for John to arrive, it was funny. Once John arrived we sat around the fire and had fun until it was time for bed. In the morning my car wouldn’t start again so after we had breakfast, goofed around, and then had lunch, John and I went in search of a new car battery while everybody else went to the beach. Once everybody was back at camp I made dinner and we sat around the fire until midnight. Friday morning we had reservations to go rafting down the Truckee River which was a lot of fun. I just wish I was able to go with everybody but I think we will go next time. The river is so calm that they let babies and dogs go on the rafts so we should be able to take Ciara and Hunter next time, can’t wait! Well that’s about it for the camping trip.

Tired after a long two hour drive to Lake Tahoe:



Ciara and Hunter still sleeping in the morning:



Most of our group rafting:



Hunter went back to school last week and to my surprise, he is going to a new school. I didn’t know that until two days before school started but thank God he is with Jami and Hilary. They both have known him for years and they are the only reason that I am letting Hunter stay in school this year, I trust them completely. I took Ciara to his new school on the first day to check it out and make sure they knew what to do for Hunter and I was very happy with his new class and his teacher and aides. Usually when Hunter would come home from school I could hear him screaming when the bus would pull up but this year he is so much happier and he can’t fussed yet so he is having a great start to the school year. As for Miss Ciara, she has been doing wonderful until today. She has had three seizures so far today and they seem to be coming every two weeks and usually three a day. I am assuming that her changing hormones are causing the increase in the seizures. We have an appointment schedules with her neurologist coming up so we will see what he has to say. John started school this week so things have gone back to our “normal” crazy around here. I will update again soon and please pray for no more seizures!

Here are a couple pictures from last month:






Hugs To All,
and ^^Angel^^