I hadn't heard of NF, until I read facebook status updates that a friend from high school posted about her daughter Julia. Then I learned of other people in my community who also have NF. As a runner, I realized I have a way to help. I'll put in the miles. I'll raise funds. Which I hope will help research a cure for NF.
Thanks in advance for your support.
Here is Julia's story as told by her Mom ...
"Julia "ladybug" was born with a small cafe-au-lait on her arm. As she grew the number and size of the cafe-au-laits increased until they covered her stomach and arms. When we took her to our regular peditrician for another reason, he told us she had to see an NF specialist. We first began to learn about the devestating disorder Neurofibromatosis, NF, at that time.
Julia has NF1 due to a spontaneous mutation at conception, for some reason the genes didn't "copy" correctly. There is no family history of NF. She has MRI's every six months to check for tumors in her brain and spinal cord.
We are thankful everyday that Julia has only had to endure a lot of doctor appointments and a lot of tests. Julia is quite a trooper! She doesn't complain when she can't eat for up to 15 hours because we're waiting for an MRI. She doesn't even complain when the anesthesia makes her sick. Julia has had to miss parties, activities and play dates because of doctor appointments or tests. Julia has been and must continue to be a strong girl. We worry like every other parent does about our child's future.
"As Julia's parents we feel compelled to take positive action to fight this devastating disorder. We hope everyday that a cure or at least some treatments for NF will become available. We also pray she will never need them. This is a cause very close to our hearts and we are asking you to join with us and get involved in this fight. We must take action not just for our daughter but for all people and their families affected by NF."