Stafford Springs Teen With Skin Disease Needs Your Help - NBC Connecticut

Stafford Springs Teen With Skin Disease Needs Your Help

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    NEWSLETTERS

    Stafford Springs Teen

    (Published Thursday, Dec. 10, 2015)

    A Stafford Springs, Connecticut, teen who suffers from a rare skin disease is getting support from a campaign to his life a little bit easier.

    Jonathan Gionfriddo is 16 years old. He suffers from a skin disease named Edpidermolysis Bullosa, which gives a life expectancy of about 20 to 30 years old.

    “There are some tough days. Truthfully I don’t know how I get through, I don’t know how anyone can get through this,” Jonathan said.

    His mother, Brenda, not only cares for Jonathan, but her other two other children. She said the days are tough for her as a single mother. With constant trips to the doctor, the medical bills have been adding up.

    “The disorder -- it’s hard because it involves a lot of pain, a lot of doctor appointments.”

    Brenda drives Jonathan in an older model SUV. In order to put Jonathan's wheelchair inside the trunk, she uses crane to lift it up. As the NBC Connecticut crew watched the process of putting it in the car, it was clear it was no easy task.

    Brenda said system is not reliable -- the wheelchair has fallen from the crane on top of her several times.

    “A van that’s equipped to put a wheelchair on to it and it to have a ramp and put a wheelchair on it is pretty expensive and I can’t afford one."

    Now, there’s hope for the Jonathan and his family.

    Toyota of Wallingford and Radio 104.1 have teamed up to raise $104,000 dollars to make Jonathan and Brenda’s life easier by using a GoFundMe page.

    People can also donate at various drop zones across the state at: Branford Academy of Hair and Cosmetology; Hartford Trucking Co.; Splash Car Wash; Comprehensive Orthopedics; Seasons Federal Credit Union; US Residential Property Management; Belle Academy; Marinello Schools of Beauty; Paul Mitchell Academy; Vans RV; Noodles and Company, Radio 104.7; Toyota of Wallingford; and Garsan Construction.

    The money raised will help the family buy a new van with a system to help put Jonathan's wheelchair inside of it, a new ramp for their home, help with medical bills, among other things.

    Jonathan said his mom helps keep him going.

    “She does a lot and I’m really thankful,” he said. 

    Brenda said her son is an inspiration to her.

    "Most people have to sit and ask you how do you do it. Well he’s my son."