All Aboard! This is What Living with a Rare Disease Should Look Like

Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition 24/7.

That is the life of Jonathan Gionfriddo living in Connecticut. At birth, he was diagnosed with a rare condition called epidermolysis bullosa (EB). Having this condition means Jonathan’s skin blisters easily and tears at the slightest amount of contact or even temperature change.

Not only is Jonathon affected externally, but inside his body as well.

Jonathan’s mother told WTNH Connecticut that he lives in constant pain and has had to undergo many surgeries. But despite all that, Jonathan recognizes that life is a gift, and he doesn’t intend on wasting that gift.

Jonathan wants to live with epidermolysis bullosa, and he wants to live well.

For him, that means chasing his dream of trains. Yes… trains. Because why not?

You guys remember Thomas the Tank Engine?

He’s essentially Jonathan’s hero—well, two-year-old Johnathan’s hero. He’s loved trains ever since then and has always dreamed of becoming a train engineer.

It looks like that dream is coming to fruition!

A local medical center teamed up with a nearby railroad company to ensure Jonathan got his wish. That’s how he found himself one day boarding a steam engine that he got to engineer himself!

In that moment, Jonathan forgot about epidermolysis bullosa:

  • the doctor appointments and surgeries,
  • the medicines and pain,
  • the complicated jargon and high-pitched beeps of hospitals.

Manning that steam engine, Jonathan was just Jonathan, a 16-year-old kid who had dreamed of becoming a train engineer one day.

Instead of reading about this crisis and that politician, these are the kind of stories we should be hearing every single day. Stories about real people overcoming real struggles. Stories about inspiration.


To find out more about epidermolysis bullosa, click here! Share what you learn in the comment section below!

Lady Kehveen Abernathy

Lady Kehveen Abernathy

Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.

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