Taylor and Kirsten are 7 year old identical twins with a condition called neurofibromatosis. They were diagnosed when they were 8 months old from a tumor that was discovered on Taylor's back. Neurofibromatosis (NF) causes tumors to grow anywhere in or on the body on nerves. It affects 1 in 3,000 people. The girls were a result of a spontaneous mutation, meaning that neither I nor their father have the disorder. It was an error that occured before they split to become twins. 50% of all cases of NF occur because of this same mutation. The other 50% are passed on from parent to child. Taylor and Kirsten have very different manifestations of the condition which is one example of how NF is so unpredictable. Taylor has 8 tumors in her body and also has severe scoliosis. Her scoliosis was so severe that at the young age of 7, she had halo traction for one month followed by spinal surgery to insert titanium rods in her back. She will have surgeries every 6 months to lenghten her rods to allow her to grow. On top of surgeries, she will have MRI's at least 2 times per year to monitor the tumors. She has been under sedation/anesthesia over 45 times!! Kirsten has been much more fortunate in her manifestations from NF. She has many of the social aspects of NF and has a few small dermal tumors that we know of. NF has really changed all of our lives. We would love to see a cure or treatment during their lifetime. Please help us raise awareness and funds to find a cure!

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