Girl With Half a face (Neurofibromatosis)

[ChazII]

http://www.extratv.com/2013/11/13/sneak-peek-a-heart-wrenching-look-at-the-girl-with-half-a-face/?utm_source=twitterfeed&utm_medium=twitter

My son and I have the same genetic disorder. My son's plexi is not as severe as the girl's but it does cause rude stares.

[Warpy]

1. Poor kiddo. She's got a lot of surgeries ahead, I'm afraid

This one was likely put off until she got her final growth spurt and what she has is not terribly functional any more.

I hope she looks like her best dreams of looking after the operation.

[ChazII]

2. Tumor could grow faster

if surgery is not done at the right time. Plexiforms can grow back more aggressively even though surgery is done to debalk the tumor. The rule of thumb is function over form. In other words, if everything is function then you don't touch it.

My son and many of my cyber friends in the NF community have walked more than a mile in this girl's shoes.

[hedgehog]

3. I am awed at your strength.

[ChazII]

4. Thank you, a sense of humor

and friends help us develop strength.

Since it is a mutation chromosome 17 that cause this disorder we often refer to ourselves as members of the X-Men.

[hedgehog]

5. What else can I say, but