A deadly condition called Epidermolysis Bullosa is making headlines recently.
It's a rare and deadly skin disorder that targets children.
A Johnstown baby was born with EB and now his mother is doing everything in her power to get him help.
Little Jackson Baldwin is like any other toddler, curious and busy and playing with his ‘Rock and Roll Elmo’ doll.
But his mom, Jessica Valik, says he suffers every minute of every day with blisters and sores on his body that hurt worse than a third degree burn.
“Where is Jackson, there he is,” joked Valik as she played peek-a-boo, pulling a piece of fleece from her son’s eyes.
Seven-month-old Jackson is the light of his mother's life.
“Oh my gosh, he is my whole world, I love him to pieces,” Valik said.
She tells us every day is a gift; but some days, like today, are tougher than others.
“Jackson has four infections right now,” Valik said. “But that is, unfortunately, a common thing.”
Jackson gets painful blisters and loses his skin from even the slightest touch.
“I think the hardest part of every day is seeing my child in pain,” Valik said.
Jackson has to wear bandages from head to toe and he might never be able to ride a bike, play outside, or even take a walk.
But Valik says a risky stem cell treatment could save his life.
“I could squeeze him as much as I want and give him a big old hug,” she said hopefully.
Jackson's been approved for a bone marrow transplant at a hospital in Minnesota, but Valik says the procedure costs about $1.5 million and she hasn't been able to get much help from Medicaid.
“Without the bone marrow transplant he probably won’t make it past childhood,” Valik told us.
But still, through the hourly dressing changes, the blister treatments, special baths, countless medications, and regular trips to the hospital, Valik holds onto hope.
“I believe in him and I believe that he was put on this earth for a reason,” she said.
She’s hopeful not only for her baby's future, but for so many others battling EB every day.
“I’m sure everyone wants to see their child grow into an adult and live a happy life and do whatever they want to do,” Valik said. “I want to give my son the opportunity to do that.”
That bone marrow transplant has helped a lot of kids with EB, but others have died because of it.
Jackson's struggle has grabbed the attention of our local lawmakers.
Congressman Paul Tonko tells us he's working with federal and state agencies to get Valik and Baby Jackson the help they need.
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