There’s renewed hope for a little boy in Marietta who's living with an awful, life-altering disease.
His doctor is on the verge of a major breakthrough and only 11Alive has an update on a story first reported two years ago.
Two-year-old Reid Underwood was born with a horrific and rare skin disease called Epidermolysis Bullosa, or EB. Basically, his body doesn’t produce the Velcro, the adhesive that keeps his skin together. EB is a rare skin disorder that is often fatal at a very young age.
Despite the overwhelming challenges Underwood and his parents face, they’re optimistic because his doctor thinks he is close to a huge breakthrough.
Reid has the mind of an unaffected, normal two-year-old. His body, his skin, though, won’t allow him to be normal. A simple bump, scrape or scratch can quickly become so much worse. Reid has a defective gene that doesn't allow his body doesn’t product collagen.
His skin tears and he’s constantly covered in wounds.
“He wants to get on a slide, he wants to get on a swing, and so that’s kind of heartbreaking,” said Audra Underwood, Reid’s mom.
“It definitely gets harder and it works on you as a parent emotionally and psychologically,” Reid's dad Brian Underwood said.
Right now, though, the Underwood’s are encouraged. The toddler's doctor, Jakub Tolar at the University of Minnesota, in essence, has discovered and tested a way to correct the bad gene.
“He just wants to fix the problem and he knows how painful and how debilitating this disease is,” said Audra Underwood.
11Alive spoke to Dr. Tolar earlier this year about his work with EB.
“It’s one of the most grave diseases I’ve ever seen and I’m treating children with cancer for a living,” Dr. Tolar told 11Alive's Chris Hopper over the phone.
Last year, Tolar performed a bone marrow transplant on Reid as a way to treat his EB. It’s working, but his latest researching could be life-changing.
“Dr. Tolar is completely focused on solving this disease and we know that he’s so close,” Brian said, hopeful.
But, Tolar told told the Underwood’s this week that the biggest challenge his research will face now is funding. He has set up a 501c3 where people can donate so he can continue his research into the devastating disease.
PHOTOS | Reid Underwood and his family