Friday, February 8, 2013

Neurofibromatosis on national television!

I have to tell you guys, I almost pee'd with the knowledge that the very popular Fox TV show "Bones" was going to be adding scenes that addressed NF!

Show writer Michael Peterson wrote the content in from a very personal place, as his young daughter is also affected by NF.

There is a full interview here, but there was one answer that struck home for me:

As we say in the episode, NF, there is no cure, there is no treatment. We want to not only spread awareness, but we want to find a cure in our daughter’s lifetime. So that’s what we’re dedicated to: first to tell people what it is, and then we want to do whatever is necessary to help people out. So that’s our number one thing. We are blessed to have this opportunity to reach out and tell an audience of 10 million people, “Here’s this thing you may not have heard of.” 

Thank you, Mr. Peterson.  Thank you for spotlighting this common but potentially devastating disease, and raising awareness.

For those in need of an update on Bug: Speech and Occupational therapy are slow going, but we're getting there. Riley has finally mastered walking on his toes (though not walking backwards,) and is gravitating more and more towards silverware and "real" cups and plates.

His vocabulary has expanded already in the three short months we've been working with the therapists, including now being able to say his cousin's name, "Hi," "Bye," and, much to my chagrin, "Bitch" if he hears someone else say it.

His cafe-au-lait spots are growing, and his last MRI confirmed lesions on his brain, but we're not worried.  We have a well-check coming up in March, where I will raise some concerns about mast cell overactivation and the itchies he gets sometimes, as well as the growth of his legs.

All in all, we're progressing forward in a positive way.  Thank you to all of you who continue to follow our journey with NF1. Your support is invaluable, and I promise - I'll post more often!

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