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| Renae Stob's Fundraising Page |
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Renae at School Nov 2009 |
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| Hi. My name is Renae Stob. Thank you for visiting my fund-raising page!
I was diagnosed with neurofibromatosis (NF) type 1 when I was two years old. My pediatrician noticed that I had some funny looking skin discolorations called “café au lait spots”. As a baby kid I visited my pediatrician often because I had lots of trouble learning how to do basic things. She was very nervous about my health. I was very tiny and I just could not learn to talk. She had some ideas about the spots and sent me to the Genetics Clinic at Children’s Hospital in Seattle where they diagnosed me with NF1.
When I was 4 years old, I had surgery on my brain because I had hydrocephalus. Some people call it water on the brain, but it really is spinal fluid. They put a shunt in my brain to drain it. If I didn’t have this surgery, I may have died because little NF tumors were causing the fluid to build up in my head and compressing my brain. It was scary for me and my family. Every year I go back to Children’s for an extensive sedated MRI of my brain and my optic nerves because one of them is messed up.
I have a hard time learning how to do basic things. My speech is so limited that only my family, teachers and some daycare people can sort of understand what I am saying. My NF makes it hard to learn. I use a special computer to help me talk, but it is not the easiest thing to use either. I like my special classroom and teachers. I love riding the bus and going to school. I wish I could go every day. The picture on my fund-raising page was taken at school just a little while ago. Even though I can’t talk very much, I still say “hi” to everyone and have big smiles for them.
I have a brother, Jonathan, who is just the best. He really looks out for me and plays with me. I have lots of fun taking care of my baby dolls and watching DVDs that make me laugh. My mom takes me to a cool soccer team called TOPS and a really fun Challenger baseball team. My dad is mostly involved in raising awareness about NF. He also does a lot of fund-raising and goes to a lot of meetings about it.
Would you be willing to help by making a donation for NF research? No amount is too small. The little bumps (fibromas) and spots bother me and there are a lot of smart people trying to figure out how to stop them.
Renae Stob |
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Total Donations Collected:$2,470.00
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| Goal: $3,500 |
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Sorry.
Fundraising has ended.
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