JOHNSTOWN, NY. - Baby Jackson Baldwin, or "Jax," is making history and inspiring others. His mother Jessica Valik says tells NEWS10 he is now the youngest person to survive a risky bone marrow transplant to treat his rare skin disorder; a disorder where his skin blisters and falls off at the slight touch.
On top of that, Valik says Jax is healing ahead of schedule. The doctor allowed them to come home from Minnesota for one week to visit with family. The doctor first told her she would have to wait until 100 days after surgery before traveling, but Monday she says is only day 82.
"Jackson's skin is a lot tougher now, he still gets blisters, but not as easily and he can play now, he's taken his first steps in his gate trainer," Valik said.
NEWS10 first introduced Baby Jax to viewers in March. Then he was just six-months-old and his little body was covered in protective wrapping, his face and hands covered with blisters. Valik couldn't touch him to sooth his pain without causing him more. Jax's condition is called Dystrophic Epidermolysis Bullosa.
It was in March when Valik made a plea for help to political officials and government agencies.
Shortly after, Valik learned Medicaid would pay for the more than $1 million treatment that he could only get at a hospital in Minnesota. Valik and Jax flew to Minnesota in April to start the long process.
Valik says her son, now 14-months-old is the youngest person to survive the risky bone marrow transplant.
"I think the hardest part was leaving here in April and not knowing if I was going to be coming back with Jackson," Valik said.
Valik remembers the day they got the transplant, she says the doctors had to change their original plans and manually pump the cells through a central line in his chest that goes directly into his heart.
"It's probably the hardest thing a person will every have to go through, just going through so much and knowing there's nothing you can do and you don't know," Valik said remembering the day of the transplant.
Valik says she is so happy she can finally hold and touch her son.
"I'm still getting used to it," Valik says. "I have to remind myself it's okay to touch him, it's okay to hold him it's okay to even kiss him. I can do that now and it's huge to me, it's huge to everybody.
Jax and his mom plan to head back out to Minnesota on October 15th for their 100 days post surgery check up. Valik says there are still tests to be done, but if all goes well they will be home for Thanksgiving.
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