Jonathan

Name: Jonathan Gionfriddo

Location: New Britain, Connecticut, USA

Form of EB: Recessive Dystrophic

Birthdate: May 11, 1999

Lives With: Mom Brenda and Dad Dominic and sister Ashley

More About Jonathan:

        Hello 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 EB.
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.

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