07/10/2014 06:59 pm ET Updated Dec 06, 2017

'Turtle Boy,' Kid Born With Mole Covering 40% Of Body, Has New Hope Thanks To Fierce Advocates

New groundbreaking research is bringing long-awaited hope to a Colombian boy who was born with a rare skin condition whose cause, until now, has been a medical mystery.

Didier Moltavo, dubbed "Turtle Boy," according to MSN New Zealand, because of his congenital birthmark that covered 40 percent of his body, may no longer have to worry about the effects of his debilitating condition. Didier has congenital melanocytic nevus (CMN), a skin condition that causes such birthmarks to develop and, until recently, doctors were only able to treat with surgery that often wasn’t a long-term solution, Sky News reported.

The world first met Didier in 2011 when he and the nonprofit, Caring Matters Now -- a group that supports people with CMN -- were profiled in the documentary "Turtle Boy." Since then, life has improved immensely for Didier.

His "shell" was removed the following year by Dr. Neil Bulstrode, a leading plastic surgeon from Great Ormond Street Hospital in the U.K. He flew to Bogotá with a team to remove the mole from Didier’s body with a series of skin grafts free of charge, according to Long Island Press.

The procedure played an invaluable role in the 8-year-old's life.

Prior to the surgery, Didier was ostracized from his community and was not able to attend school.

"I want to grow up," Didier said before his surgery, according to Long Island Press. "But the mole won’t let me."

Though his mole has started to grow back, nascent research may be able to help Didier and other people who have the same condition.

CMN occurs in about 1 in 20,000 births, according to Caring Matters Now.

Finding a cure is critical for those who have the condition because some 15 percent of people with severe CMN are likely to succumb to melanoma, according to Sky News.

But people with CMN can now finally breathe a bit easier.

Over the last year, researchers have found the cause of CMN and have been able to reverse the growth of CMN moles after birth.

The breakthrough is a testament to the fierce advocates who refused to give up on finding a cure.

Caring Matters Now provided the initial research funding of 80,000 British pounds (more than $137,000), Sky News reported.

Jodi Unsworth, who was born with a severe case of CMN, first established the nonprofit in 1998 when she was 17 and a patient at Great Ormond Street Hospital with extensive CMN, according to the group’s website. Her birthmark covered 80 percent of her body, making her acutely aware of the physical and emotional strains the condition can wreak.

With the help of Caring Matters Now, Didier and his mom, have been able to travel from Colombia for the first time to meet other kids with CMN and to partake in a joint treatment program with both Great Ormond Street and the Beatson Institute in Glasgow.

The most exhilarating part of this experience for Didier, though, has been being able to meet other kids who live with similar struggles.

According to Sky News, Didier told his translator that "it was good to know it was not only he who has this scar."

To make sure Didier continues to get the treatment and support he needs, consider making a donation to Caring Matters Now. The nonprofit has launched a fundraiser in his honor and 50 percent of all proceeds go directly to helping the boy and his mom. Find out more here.

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