Sylvie was diagnosed with neurofibromatosis type 1 when she was only 4 months old and has been through more in her second year of life than most people go through in their lifetime.
Born with tibial dysplasia, which is one of the many possible complications of NF, her left tibia and fibula fractured three weeks after her first birthday and then wouldn’t heal correctly.
Amputation was a real possibility. Something no parent should ever have to worry about. Sylvie underwent major surgery to reconstruct her lower leg with bone grafts and intramedullary rods when she was only 16-months-old; she was on the operating table for over nine hours!
Post-surgical recovery was not easy. Sylvie had an external fixator with four metal pins running through her leg and bone for over three months during which time she battled five infections and was in constant pain and discomfort.
You can make a difference for children like Sylvie. No child should have to go through this, so I am running in my undies in the freezing cold because I will do whatever it takes, no matter how ridiculous, to help find a cure for NF!
Your donation, whether it be $5 or $500, will provide critical funding to the Children's Tumor Foundation and allow for clinical trials, treatments and ultimately the cure we desperately need.
I sincerely thank you, Sylvie thanks you, and the millions of families who will benefit from this effort thank you.