Name: Jonathan Gionfriddo
Location: New Britain, Connecticut,
Form of EB: Recessive Dystrophic
Birthdate: May 11, 1999
Lives With: Mom Brenda and
Dad Dominic and sister Ashley
More About Jonathan:
I'm Jonathan I have a rare genetic skin disorder called Epidermolysis
Bullosa EB for short. I get blisters everywhere including my mouth and
throat. The day I was born they knew something was wrong but they did
not know what. It took 2 days for them to find out and through the wait
my parents were very scared and anxious. They didn't know what to expect
or were this would go.
The first person my parents saw with EB was Nicky an amazing little boy
with great courage and the most beautiful smile. Friends found his site
on the Internet created by his mommy Silvia to help people understand.
This helped a lot to be able to know that I was not the only one with
Through Nicky's site and the Internet my mom has been able to meet many
wonderful people and children who have EB and lots of others caring for
children with EB. They give her lots of information
and lend a shoulder when she needs it. They are what hold her together
at times when she can no longer see the silver lining. She loves them
a lot and they are now part of my family and always will be.
I love to smile and laugh and watching my sister run around makes
me laugh a lot. I am usually always happy but at time I am in pain. My
mommy puts bandages on me everyday to help them heal and to keep them
from infections. She holds me when I cry and tells me she loves me a lot
and one day there will be a cure for EB. She is not sure when but is determined
to find a cure like so many other mommy's who have children with EB. I
have lots of toys and like to play on the floor. I love to watch TV Blues
clues is my favorite show. I do not crawl yet but am working on it and
one of these days I will surprise every one and just do it. I love it
when my mommy tickles me and kisses me all over it makes me smile and
laugh. There are a lot of people who love me including some people I have
not ever meet but just the same I love them to just because they care.
My sister keeps saying that Jesus is going to help me and make my boo
boo's go away which makes me happy even if it does not happen it shows
me that my sister loves me a lot. With all the love I get it is hard not
to be happy.
All I need in this life is love.
That makes all the difference.
Send e-mail to Jonathan's mommy
You've got a friend in me from Toy Story
Even if you're not, pretend to be. No one can tell the difference.
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