Brave teen battleing rare illness
Donation protected
Hi I am Giuseppe's (Joseph) Uncle Michael Sabatella and I'm trying to raise money for his medical expenses. Below is Joseph's story. All the money I receive will be deposited in Joseph's trust fund to help offset his medical expenses.
Below is his story:
Hello, my name is Giuseppe Parrelli, I am 15 years old and I have Epidermolysis Bullosa.
What is Epidermolysis Bullosa?
It is the worst disorder you never heard of!
I suffer from one of the most painful conditions known to medicine, Epidermolysis Bullosa, (EB for short). This is a rare genetic skin disorder that causes the skin to endlessly blister internally as well as externally, shear
and scar. At the present time there is no known treatment or cure.
Children with EB are also known as “Butterfly Children,” because our skin is delicate and fragile just like a butterfly’s wings.
My body doesn’t produce Collagen VII, which works as an anchor to hold my layers of skin down. Any pressure, friction or tension to my body will cause a burn like blister and my skin will tear off.
My body is so sensitive that I have to be bandaged each day, to help heal my wounds, prevent infection and to protect the skin from new wounds that may form. Changing my bandages can take up to 2 hours, on days when I bathe it can take up to 3 hours. Bathing for me is the most painful, since I have open wounds all over my body, it feels like lemon juice being poured on an average cut. Because of this disorder my skin does not have the elasticity like everyone else, slowly my fingers fuse together into a mitten shape, which causes me to have surgery on my hands twice a year.
EB essentially makes my skin and organs extremely fragile. In serveral cases such as mine, it is extremely painful to do everyday tasks such as eating, walking and bathing. Playing any physical activities are totally out of the question.
Even though I was born with this horrible disorder, my outlook on life is to be the best that I can be. I currently attend high school as a sophmore doing well in honors classes plus I am taking additional credits towards a collegiate Associate degree. I have a great mom and dad and sister who support and encourage me every day and the best grandparents anyone could ask for.
I am trying to raise this money to help offset the cost of my medical supplies. I need to bandage the majority of my body on a daily basis. My medical costs exceed $18,000 every two months and my insurance only covers some of the bandage costs.
In addition, I recently had my foot amputated due to skin cancer that developed about a year ago. I am currently wheelchair bound and we are not sure how much the insurance will cover for the prosthetic that I need to be able to walk again. This has all been a financial strain on my family.
The money raised will be put in a trust fund for me and used for my monthly medical expenses. I will be tremendously grateful for however you can help me and my family and this lifelong battle.
For further information regarding Epidermolysis Bullosa (EB) please visit the site below for more information:
http://www.debra.org
Below is his story:
Hello, my name is Giuseppe Parrelli, I am 15 years old and I have Epidermolysis Bullosa.
What is Epidermolysis Bullosa?
It is the worst disorder you never heard of!
I suffer from one of the most painful conditions known to medicine, Epidermolysis Bullosa, (EB for short). This is a rare genetic skin disorder that causes the skin to endlessly blister internally as well as externally, shear
and scar. At the present time there is no known treatment or cure.
Children with EB are also known as “Butterfly Children,” because our skin is delicate and fragile just like a butterfly’s wings.
My body doesn’t produce Collagen VII, which works as an anchor to hold my layers of skin down. Any pressure, friction or tension to my body will cause a burn like blister and my skin will tear off.
My body is so sensitive that I have to be bandaged each day, to help heal my wounds, prevent infection and to protect the skin from new wounds that may form. Changing my bandages can take up to 2 hours, on days when I bathe it can take up to 3 hours. Bathing for me is the most painful, since I have open wounds all over my body, it feels like lemon juice being poured on an average cut. Because of this disorder my skin does not have the elasticity like everyone else, slowly my fingers fuse together into a mitten shape, which causes me to have surgery on my hands twice a year.
EB essentially makes my skin and organs extremely fragile. In serveral cases such as mine, it is extremely painful to do everyday tasks such as eating, walking and bathing. Playing any physical activities are totally out of the question.
Even though I was born with this horrible disorder, my outlook on life is to be the best that I can be. I currently attend high school as a sophmore doing well in honors classes plus I am taking additional credits towards a collegiate Associate degree. I have a great mom and dad and sister who support and encourage me every day and the best grandparents anyone could ask for.
I am trying to raise this money to help offset the cost of my medical supplies. I need to bandage the majority of my body on a daily basis. My medical costs exceed $18,000 every two months and my insurance only covers some of the bandage costs.
In addition, I recently had my foot amputated due to skin cancer that developed about a year ago. I am currently wheelchair bound and we are not sure how much the insurance will cover for the prosthetic that I need to be able to walk again. This has all been a financial strain on my family.
The money raised will be put in a trust fund for me and used for my monthly medical expenses. I will be tremendously grateful for however you can help me and my family and this lifelong battle.
For further information regarding Epidermolysis Bullosa (EB) please visit the site below for more information:
http://www.debra.org
Organizer and beneficiary
Michael Sabatella
Organizer
Long Hill Township, NJ
Janine Moscioni-Parrelli
Beneficiary