Neurofibromatosis Resources


Gcmrgpar's Story:

Hi, I have a 5 year old son that was diagnosed at 18 months with NF1. He had an MRI which showed optic pathway tumors. He is a tiny little boy showing some physical delays but is always happy.

When he was 4 yrs. old the tumors started to grow and he required a VP shunt placed and started chemotherapy. He has lost the vision in his right eye but the left is staying strong.

I thought the worst was behind us when we stopped the treatments however, a new problem has arrived and they now tell us that his liver is not functioning correctly. They believe he has Primary Sclerosing Cholangitis.

I cannot believe that his wonderful little boy has 2 major diseases and they don't think they are related. He is the light of our life and his spirit is always filled with joy! I wish that I had his strength so I could conquer my fears.

A scared mom from New Jersey.


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Gcmrgpar / added July 1999