Help Find a Cure or Treatment
"My skin is as fragile as Butterfly wings"
Hi! I*m Xander-I was born December 27, 2010,
diagnosed with E.B. January 19, 2011.
My family moved to South Dakota to avoid the high humidity of Florida
that is so hard on my condition (check out our blog). I am still battling the
blisters (especially on my feet and hands) but very active and happy. I
love playing outside and I want to be independent. The Doctor's and Staff
at Sanford, S.D. hospital are very interested in helping find a cure and
awareness is much more apparent. More people know about my condition
and don't look at me differently.
Please keep us in your thoughts.
This disease is not contagious, (can not be shared) so please,
do not be afraid to play with me & love me.
We are encouraged with the out pouring kindness and generosity while
spreading AWARENESS. THANK YOU!
|With me telling you & you telling 3
maybe some day there will be a treatment or a cure.
| The Doctor's show November 6, 2013 http://www.thedoctorstv.com/main/content/Butterfly_Skin
Help find a treatment or a cure for E.B. Awareness is key. . .
Why is this happening?" This is from my hair touching my skin >
(click on EB Awareness for more info)
|All JJ's Jewels proceeds will be donated to
EB families (go to "Services" for more info)