Even a tiny touch has the potential to damage six-month-old baby Jackson Baldwin's skin.
Jackson lives in Johnstown with his doting mom Jessica Valik.
Within minutes of the baby's birth, the full time mother knew something was wrong.
"He came out with missing skin on his fingers, blisters on his scrotum, and his mouth was affected as well," she said with tears in her eyes.
The ultimate diagnosis was a crushing one.
Baby Jackson suffers from a deadly skin disease called Epidermolysis Bullosa or EB.
Valik said, "Babies with EB are referred to as 'butterflies,' because the saying is 'sweet as a butterfly, but too fragile to play like one,' because their skin is just as fragile as a butterflies' wings."
And unfortunately, it will cost about $1.5 million for him to get the bone marrow transplant he so desperately needs.
The procedure for EB patients is only performed at one hospital in the country, The University of Minnesota Amplatz Children's Hospital.
But for the past six months, Medicaid, his insurer, has been calling the procedure 'experimental' for EB purposes, and his mom hasn't been getting very far trying to get Medicaid to agree to cover the transplant.
But on Friday, Valik said all of her prayers were answered when the phone rang.
"We received a phone call this morning from one of Jackson's doctor's stating that we did get medical approval from New York State Medicaid for the transplant and the consultation," Valik said with a smile.
That means that the procedure itself will be covered by New York State Medicaid.
So, the challenge now is getting everything from Jackson's stay at the hospital to his prescriptions covered.
Jessica said, "What we didn't get yet, what we're still waiting on and we're in the process of trying to get, is the financial approval from all the other providers in Minnesota."
But the concerned mother was glad to hear the transplant financial case manager say the 'likelihood is good.'
"Right now, I just feel that this is definitely a possibility. Jackson is going to get his treatment. He's gonna get it," Valik said. Just the fact that New York State is going to pay for the bone marrow transplant, that's such a wonderful, wonderful thing. I'm so excited. And I'm just, I'm speechless."
So for now, it's just a matter of keeping Jackson healthy -- not an easy task with 27 medicines, and tube feedings every four hours.
"The daily struggle is just putting him through daily dressing changes, just seeing him in pain every day," Jessica said.
"He can't even suck on a binky, 'cause it hurts him," she said.
While she gently pulled back his soft t-shirt, Valik said, "Even just from laying in his crib this morning, when we woke up and I went to change his outfit, he had a huge bubble almost wrapped right around his arm there, and I had to drain and dress that."
But thanks to media coverage, even strangers have helped.
An anonymous citizen dropped off a dozen extra soft cloth diapers at her door Friday morning.
"Because disposable diapers cause way too much damage," she said.
Valik says after watching her baby suffer for six months, she has plenty of dreams for her Jackson.
"I hope that one day he can eat candy, eat chips, eat his birthday cake on his birthday, and not worry about damaging anything in his mouth, or hurting. I hope one day that he can run around and play with other kids and not have to worry about bumping into anything and causing more blisters and more pain," she said.
Even if or when the Minnesota physicians and hospital agree to accept New York Medicaid as coverage, Jackson's family is still facing an uphill battle.
Jessica says the baby will require about a six-month hospital stay, and her travel and hotel costs will obviously not be covered.
To donate money to help Valik and her baby, you can go to any Bank of America branch across the country and say you would like to give to the "Jackson Baldwin Fund.
You can also click here for more information about the baby, the condition and the cause.
