How One Little EB Super Cutie is Changing Her World

When we need it most, stories can inspire, encourage, and quite frankly, make us feel good.

Especially if the story is about a super cute little eight-year-old girl who was born with a rare genetic disease called epidermolysis bullosa (EB) but doesn’t let her disease define her.

The cutie-patootie’s name is Rafi (Rafaella) Kopelan, and she’s one in the 20,000 children in the U.S. known as “butterfly children.”

While most eight-year-olds may focus on Teen Titans Go, recess, or grilled cheese sandwiches, Rafi is one that must put time and effort into leading a “normal” life with her disease.

This little one serves as a reminder that age doesn’t equate to game changer potential. See her full story here.

It probably wasn’t too long ago that Rafi crossed that milestone of learning how to tie her shoes (a momentous transition from the little kid Velcro world to the land of shoestrings).

But, this little girl, along with the help of her parents, have organized events and fundraisers to raise money—Rafi’s Run, a 5K race, and Fun Run in Riverside Park in Manhattan, “…The fifth annual run… raised close to $100,000.”

We all want to do good – whether it’s for ourselves or our loved ones, the planet, or society at large.

No matter how big or small, good deeds carry a double punch – we make a positive impact, and we feel great at the same time. One of the greatest things any of us can do in life is reach out and do a good deed for another human being.

Whether it means offering your love and compassion, or making a charitable donation of time, energy, or money, there are many ways to bring sunshine into the lives of others.

I think we should all consider following the lead of little Ms. Rafi—empower the EB community by being a change agent.


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