Hey Cristina,

Glad you had a great time helping to spread awareness of EB, it's
about time that the general public aknowledge how dreadful this
condition can be. It still amazes how many people still don't know
or haven't even heard of Epidermolysis Bullosa. But I believe that
would change, as we sufferer's continue to make our voices herd.

I hope your keeping well, it's been awhile since I last spoke to you!
Keep in touch.

Take care for now,
God Bless
Hon

--- In butterflychildren@yahoogroups.com, unicorngirl1983@a... wrote:
> Hi all!
>
> As many of you know, I was filmed last June for a show called
Medical
> Incredible on the Discovery Health Channel. It was a very fun
experience and I hope
> it will help spread EB awareness.
>
> The episode my story will be on is called "Butterfly Skin" so you
can't miss
> it! It will air on the Discovery Health Channel on Friday,
September 30th at
> 10pm. If the air date changes I'll notify everyone again. You can
visit the
> _Discovery Health_ (http://discoveryhealth.com/) Channel website
for more
> information, just type "Medical Incredible" in the search box and
then click on
> tv listings. This is what they have listed as the episode
description:
>
>
> "Medical Incredible
>
> Butterfly Skin
> An 18-year old impaled by a fence post, undergoes surgery to have
it
> removed. A 21-year old's skin blisters at the slightest touch and
falls off. A
> pregnant woman in a coma somehow goes into natural labor. A
Baltimore surgeon
> performs ankle transplants."
>
>
> If you miss the episode it will re-air on other days, just check
your local
> listings for days and times. I know many of you also don't have the
Discovery
> Health Channel so if you'd like me to make a copy on DVD or VHS and
send it
> to you please e-mail me.
>
> Feel free to pass on this e-mail if I've forgotten anyone. I'm very
excited
> and a little nervous, I can't wait. I can't believe the episode
title is even
> named after my story!
>
> Also be sure to watch Extreme Makeover: Home Edition on September
25th
> because the wonderful Thom family, who was recently in a
documentary called My
> Flesh and Blood, will be receiving a home makeover! Susan Thom is a
wonderful
> women who has adopted several special needs children, two of which
had RDEB.
> Sadly both of them passed away including my friend Anthony, just
last December.
> They're a very deserving family, I'm very excited for them.
>
> Anyway, if you'd like to contact me you can either e-mail or
call me at
> 760-840-9178. I actually will not be here the day it airs, I will
be at camp
> for 4 days. So you all will get to see it before me! I'm not sure
if my phone
> will get reception at camp or not but if not I will be back on
Oct. 2nd.
>
> Thanks for everyone's support. HUGS
>
>
>
>
> ~Lots of Love~Gentle Hugs~Butterfly Kisses~And Special Wishes~
>
> })i({ Cristina })i({
>
> With skin as fragile as butterfly wings
> Big brown eyes and a heart that sings
> I'm small in size but not in hope
> I continue to survive and cope
> I use my wings to fly and soar
> Isn't that what butterfly wings are for?
>
> Visit my site: _www.ebinfo.homestead.com_
(http://www.ebinfo.homestead.com/)
>
>
>
>
> [Non-text portions of this message have been removed]