Ciara B. - Quilt Finished in 2007

Born: May 7, 1996

Illness: Sanfilippo Syndrome

Ciara B.'s Story (Sister to Hunter B.)

Written by Ciara's mom Alicia in 2007

Ciara has Sanfilippo Syndrome which is also called MPS-IIIA. Sanfilippo children are missing an enzyme which helpd break down the sugars in their body so the sugars collect and cause progressive damage to their brain, heart, liver, joints, etc. and 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. We thought she just had a hearing problem and I took her to doctors for 3 years and eventually they labelled her as Autistic.  On her first day of school the teacher looked at her and told me that she thinks Ciara has Sanfilippo Syndrome.  Of course I had never heard of it so I went home and looked it up and then freaked out because I knew the teacher was right.  I called her doctor who did some tests and sure enough, our fears were confirmed.

Ciara used to be able to walk, run, and talk but as time went on, she started to regress and now she is in a wheelchair and can not walk or stand. She can not talk anymore and we live to see one of her smiles that she will flash us once in a while.  She has been having seizures for the past six years.  Three years ago she had to get a feeding tube because she kept aspirating and getting pneumonia so she can't eat anything by mouth anymore, but every now and then we give her a taste of something, you know a girl has to have some chocolate once in a while!  We came very close to losing Ciara over the summer and I pray that she doesn't get another pneumonia because I don't think she can make it thru again so please pray that she stays healthy.  Ciara loves her little brothers who also have Sanfilippo, Hunter is 9 and Tommy passed away four years ago when he was 4.  When the boys were babies she would drag them around the house like little dolls and say "baby baby baby" and would not let me touch them because they were hers.  Her cousin who is 3 years older would get mad because a little 2 year old Ciara could whistle and he couldn't.  She was so funny and so full of life and I thank God for letting me be her mother.