Dream comes true for teenager with rare skin disorder

Jonathan Gionfriddo aboard the Essex Steam Train engine

ESSEX, Conn (WTNH) — Sixteen year old Jonathan Gionfriddo, from Stafford Springs, has had to deal with health issues over the course of his life. He was born with a rare skin disorder called Epidermolysis Bullosa. In most cases the condition is hereditary.

“So if he gets bumped or itches or any kind of trauma he will either blister or the skin will tear. It’s internal and external,” said Brenda Gionfriddo, Jonathan’s mother.

Brenda says her son is often in a great deal of pain all over his body. He’s also had to go through several different surgeries.  Despite it all, it’s never stopped him from having a positive outlook on life.

“At least I’m able to have a chance at a life at this moment,” said Jonathan. “Other people wouldn’t have had a chance at living and could’ve died at the age of one or two.”

Despite the setbacks, Jonathan has never let anything get in the way of his interest for trains.

“It was probably between one or two years old that he saw Thomas the Tank Engine and that just started his love for trains,” said Brenda.

In fact, Jonathan’s dream has always to become a train engineer. Thanks to Connecticut Children’s Medical Center and the Valley Railroad Company in Essex, that dream has become a reality. Jonathan was given the opportunity to climb aboard one of the steam engines and take the controls during a ride down the tracks.

“He wasn’t at that moment playing engineer, he was the engineer,” said Kevin Dodd, president of the Valley Railroad Company.

The experience was extremely impactful. For a few brief moments all the pain and hardship faded. Happiness was the focus for Jonathan and his family as they watched his dream come true. There was also an emotional moment when Dodd gave Jonathan the pocket watch he’s had for years.

“This is what it’s all about is giving back to the community, sharing what we do with others,” said Dodd.

As for Jonathan, this is an experience he will never forget.

“I really thank everybody. I really thank everybody for what they’re doing for me and this should be a good year.”

If you would like more information on Epidermolysis bullosa, click here.

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