John is 12 years old and has Neurofibromatosis (NF). He is incredibly brave and we are blessed to have him in our lives. We learned about
NF when John was 1 year old and had several "birth marks". These marks we learned were cafe au lait spots which is one of the diagnostic
criteria for NF. We saw a doctor every year who evaluated John for having NF. When he was 4 he was officially diagnosised with NF1. At
that time he was having vision problems and had his first MRI. His MRI ruled out a tumor as being the cause, but did show changes that are
consistent with NF.
When John was 8 (October 2005) we found a brainstem tumor. In 2006 he had 3 surgeries on this tumor and started chemotherapy. He
recovered great from all 3 surgeries. He has received about 40 chemo treatments over 14 months, his last treatment was in January 2008.
This tumor will always be there and can start growing again at any time. He also has severe nerve pain/itching which is how we found this
tumor. This pain can get very intense, but is pretty well controlled with anti-histamines and 2 different neuropathy medicines. When John is
sick this pain usually "flares up" and he needs to take extra medicine. He has other areas in his brain that we are watching and a few dermal
neurofibromas (these don't bother him). John has talked with his classmates about NF and his tumor, his surgeries and chemo treatments.
We have watched him overcome and deal with more than we ever have. He is incredibly brave and strong.
There is currently no effective drug treatment for neurofibromatosis (NF). The Racing4Research program helps to change that by funding Drug
Discovery Initiative(s). 100% of all donations go directly to discovering new and better treatments for NF and to find a cure.
We are inspired by John and others living with NF
Please help to stop these tumors
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