Today I received a very nice email from John, in Alaska. I am thrilled that what I hope would happen with my site, is happening. Others are learning they are not alone when they see my site as well as other site that support and discuss NF issues. I’m happy that this can be a meeting place to share our stories. We all have stories and anyone with NF is what I would call a real trouper. You are strong and you can make it. Lets support one another. Please read John’s message and give him support. Thank you .
My son was just diagnosed w/ NF1 a week and a half ago. He just turned 5 today. He has tumors in his upper arm and groin area and several CAL’s – he has had no other evaluation to date – we live in Alaska (My state is bigger than your state J) so most treatment options will be in the lower 48 and we are playing the waiting game until a treatment/observation program can be developed with the aid of those doctors. I have been looking on the internet and came across your site and felt compelled to write you a short note. I am encouraged by your outlook on life and only hope that my son will exhibit the same no matter how this disorder presents itself throughout his life. I do have a question…maybe its easy to answer…maybe not…what advice would you give a parent to ‘protect’ their child from social ridicule? 10 days into this diagnosis and I am already thinking that I want my son to ‘live a normal life’, build up his self esteem to the point where it doesn’t matter what other people think. But I don’t live in a cave and realize that there are so many mean people in the world and I will do anything to protect my child. I can already feel the anger inside me building up at these unknown people who may be the source of this ridicule. I apologize if this is too personal of a question to get from a stranger. Best regards,John