Not to bore you with all the details, I’ll get right to the main point. Denver is affected with this disease, and we as his parents, family and friends will do all in our power to find a cure for Neurofibromatosis. The love that is within me, as a mother will define all odds and I will run 1,000 marathons if needed – and far beyond that. He has had 2 surgeries to remove a neurofibroma from his cranium - which went perfectly. We hope that is all he has to endure through NF.
Allow me to give you a little background on Neurofibromatosis. Neurofibromatosis is a neurocutaneous syndrome passed down through the parents' genes, and it affects the brain, spinal cord, nerves, skin, and other systems in the body. Neurofibromatosis is defined by tumors, called neurofibromas, which grow along nerves in the body, or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the future.
NF1 occurs in 1 in 3,000 births. Enlargement and deformation of bones and curvature of the spine (scoliosis) can also occur. Occasionally, internal tumors may develop in the brain, the eyes, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.
To give you an idea of how NF can affect one family…in my family ALONE there are 9 known cases of neurofibromatosis. Denver, myself, my mom, my pa-pa, my aunt, and four cousins - that is just ONE family.
Find more information at www.ctf.org.
For those visiting this site wondering what NF is or why we would choose to run, yet ANOTHER half marathon…We do it for our son, Denver and the 100,000 other Americans who suffer from Neurofibromatosis. We are riding to raise awareness of NF and for research & treatment of the disorder.
In order to help find a cure, we have to raise awareness and funds for research. The Children’s Tumor Foundation is the leading organization coordinating research for NF. A great way to help is to make a donation…all proceeds go towards solving the NF puzzle (research) and are tax deductible…not to mention the joy of knowing you are making us sweat!!!
Keep an eye on us throughout our training at: www.wakintexas.blogspot.com
You can donate online at this site, on an individuals site or if you prefer to send a check by mail, email me at katyanne@sbcglobal.net and I will send you the correct forms to send in!
We need your help!
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My Warmest Blessings, Katy
