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This is my daughter Gwyneth (a.k.a. "Gwynie"). Gwyneth was diagnosed with type 1 Neurofibromatosis just a few months ago. As of now, my daughter is only two and a half.
As those of you know that are aware of this disease and its effects- she has an uphill battle ahead of her, for perhaps even the rest of her life. You see, Type 1 Neurofibromatosis causes not just developmental delays in a young child- but it causes nerves in the eyes, spine, and brain to tumorise. She can also develop visible tumors on her skin, bone abnormalities, and heart defects. Since usually these are tumors in such sensitive areas surgery is usually a non option. In which cases we then have to look at chemotherapy. It can cause a vast array of problems for Gwyn from the way she talks and walks, to her sight, to her hearing, to her growth, and to her life. She does already have tumorous "gliomas" on her optic nerves, a very sensitive area being on her optic nerves and close to her pituitary and adrenal glands. These are located in the control center of the brain. That is why we all have to watch her so carefully.
Make no mistake- this is a terribly tough disease, but my daughter is a trooper. From her first day getting her EEG tests with 3 hours sleep and fifty electrodes attached to her head- she didn't cry, she didn't whimper... She smiled at Steph and I and gave us a thumbs up that would melt a glacier. Her favorite words are Dah (Dad), Mah (Mom), Jessh (Josh, Uncle and Cousin), Grah-mah (Grandma), Pop (Grandpa), and Deh-Troit (Detroit Tigers)! She loves to take walks, pick flowers, catch bugs, read stories, have tea parties, watch Detroit Tigers baseball, My Friends Tigger and Pooh, Mickey Mouse Clubhouse, Imagination Movers, and most of all being both the joy and inspiration of I, and my wife Stephs lives.
Gwyneth is a gift that God blessed us with. And as strong as He has made her, He has charged us with her well being. And that is not a task we take lightly nor can undertake alone, and that is where you come in, our family, our friends.
We have a daunting task ahead- but so do over a 100,000 other kids just like her. Everyday, we are a step closer to a therapy that could stop this condition. But to do that, it takes doctors, research, and funding. You may not know my daughter- but she isn't the only one fighting this disease. Every person that contributes is another person standing beside her, and children like her, fighting this as well. Every little bit helps- and while this is a lofty goal that has been set- it is do-able, but with your help it won't be a goal- it will be a cure.
Please feel free to email me at firstname.lastname@example.org if you have any comments or questions.