To the Editor:
Imagine being told that your child has a disorder for which there are few medical treatments and no cure. That's what happened to my husband and I 11 years ago when our son Ryan was first diagnosed with neurofibromatosis (NF).
NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. With no cure and few treatment options, everything felt hopeless. But Ryan, now 14, has shown courage by fighting NF with strength, dignity, and his unique
sense of humor.
Since his diagnosis at age 3, our son has undergone almost six full years of chemotherapy for inoperable NF-related brain tumors. Ryan is truly a fighter.
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Our family stopped being hopeless and became fighters, too. We joined forces with the Children's Tumor Foundation (CTF), the largest a non-profit organization in the country committed to ending NF through research. CTF believes that full-scale collaboration will lead to solutions for NF.
That alliance includes not only clinicians, researchers and other experts in the field, but patients and their families, too. This foundation has been leading the fight to end NF since 1978, and they're closer than ever to what could be the first FDA-approved drug to treat NF.
May is NF Awareness Month and we invite other members of the Mitchell community to fight with our family by learning more about NF at www.ctf.org .
Jessica Baas
Mitchell
