Ciara is such a sweet little girl, she just makes everybody smile and she brings happiness to everybody that she meets.
Favorite Hobbies:
Ciara likes to be around people and she likes loud noises because she is extremely hard of hearing. She really likes bright colors and lights too. She likes to watch cartoons and she loves to travel.
Proudest Accomplishment:
Ciara has received several awards from school for doing her personal best. She has taught us so much about life and love and what we are capable of doing. She is such a loving, sweet little girl who loves her brothers so much. From day one she wouldn't let us touch them, they were her babies and only she could hold then & feed them. So, her proudest accomplishment is teaching the world about love.
MPS Heroes:
That would have to be Dr.Kurtzburg at Duke Medical Center. She was so wonderful with Ciara and her brothers, Hunter and Tommy. Tommy passed away 2 years ago after having 3 stem cell transplants and a couple of days ago we got a card from her and she said that she is still trying to find something to help Ciara and Hunter. She has such a big heart and really cares about our children.
Words of Wisdom:
Enjoy every minute with your child, it is prescious time!
Personal Diagnosis Experience:
When Ciara was about a a year and a half we noticed that something wasn't right. She was talking but only a little bit and when she did, it sounded funny, like how a deaf person talks. So, we assumed she had hearing trouble and for the next 3 years took her to many doctors and they all said she was fine. It wasn't until she was 4 years old and I took her to the first day of school. We were only there for 5 minutes when the teacher looked at me and said, "Ciara looks like a student I had years ago who had Sanfilippo." Of course I hadn't heard of Sanfilippo before so I went home, looked it up and freaked out. I called her doctor and they tested her for it, and unfortunately the teacher was right.
