neurofibromatosis cafe

A place to talk about NF, have fun and share.


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 .

Hi Reggie,

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

June 19, 2007 - Posted by | A MESSAGE FROM REGGIE, Appearances, Awareness, Friend, Friends, Links, Medical, neurofibromatosis, News, nf, NF1, Some People


  1. So Reggie, what is your response?

    Comment by adgiant | June 19, 2007 | Reply

  2. This was my reply.

    Dear John,

    I first want to thank you for taking time to write me a wonderful email. All of the email I receive, I answer every one. Please email anytime you want. I will reply.
    I am excited about this, because all the questions you asked, I can answer. Do you know you already have all the answers to the questions you ask? First of all your son has what he needs most. After reading this email, I knew what a blessed child; to have a dad that loves his son the way you have displayed in this email. He will know you love him, because your involvement in his doctors visits.
    You will be angered when you see someone, not doing the right thing. I know people would respect the bond between his dad and son. Let the world know, yes this is my son he has NF, and I love him. Would you love your son or daughter if they had NF? How would you feel if your child had NF, or some other disorder? Would you love him or her? They will want to ASK, and they may stair, Say JUST ASK! if you have any questions. Give them a smil and a nod. Its hard to do. I find that most people will respond with the same jester. Try not to react in anger. You son will remember and love you for ever. You are doing a great job.
    PS I love Alaska, 🙂

    Comment by Reggie Bibbs | June 20, 2007 | Reply

  3. Hi John,
    I see this blog has been up a while, but I’m hoping you are still reading. You may have read above that I am just learning about NF myself since my daughter was diagnosed last week. Though NF presents differently from person to person, I think the the concerns of a parent are universal. I also worried about how people would treat Samantha..then I wondered if she would be strong enough to handle the uneducated public…this is why I wrote to Reggie…I think the JUST ASK campaign is brilliant because we remain in control…those two little words on a shirt make it okay for people to ask and those who do will get a chance to see the real person behind NF…I also have held on to this saying: THOSE WHO MIND DON’T MATTER AND THOSE WHO MATTER DON’T MIND. I believe that is true. I will surround my family with supportive friends and family who love us and those who don’t understand or can’t accept it or are afraid of it will just have to move along. I need to spend my energy on positive things. That isn’t to say that we disgard people…if they are trying to understand we should help them to the degree that we can but I will encourage my daughter to keep her chin up and be proud. We can’t change people who are mean for meanness sake but we can and should forgive them. I think that affliction is far worse than any NF condition. I hope this has helped..I am so blessed to have found Reggie and this great group of people. I believe in the power of positive thinking and prayer…I am sending good thoughts and prayers your way.

    Comment by Eleanor | August 2, 2007 | Reply

  4. Oh one more thing JOhn (I sure hope you are reading this blog) I found that when I gave my daughter control she felt better…Sam is a bit older than your son…she is 12 and wise beyond her years..but I told her she could start a website and blog and share information with others. She loves photography and I encouraged her to find beauty in the world through the lens. She had put together music montages (sic) before her diagnosis that were very inspiring. I just helped her find an outlet that expresses who she is. At five, that may be drawing or painting or skateboaring..whatever it is for your son I would encourage you to pave the road for him a bit…make that more accessible..every child can excel at something and feel like a superhero…just look at Reggie…talk about making lemonade.
    We can’t control NF and that stinks but we can control how it affects us and what we do with it. Resolve to be happy this moment..I am so glad I have this moment.

    Comment by Eleanor | August 2, 2007 | Reply

  5. Reggie, Can you forward Eleanor’s comments to John just in case he’s been offline? Thanks.

    Eleanor, you’re wise beyond your years too!

    Comment by adgiant | August 2, 2007 | Reply

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