State, federal leaders work with family to get sick baby treatme - NEWS10 ABC: Albany, New York News, Weather, Sports

State, federal leaders work with family to get sick baby treatment

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JOHNSTOWN, NY. - Jessica Valik gently touches her 6-month-old baby's hand.

"Even the slightest bit of friction causes blisters, but sometimes I just can't resist," Valik said as her son wakes up from his nap.

Baby Jackson Baldwin or "Jax" for short is in constant pain; he's bandaged from head to toe because of blisters and sores caused form his rare condition: Recessive Dystrophic Epidermolysis Bullosa, or EB for short.

"Sometimes it seems like the blisters come out of nowhere," Valik said. She says one of the hardest things is not being able to hold her baby when he's crying out in pain.

Jax is on over 20 medications, including an adult dose of morphine to manage the pain.

Valik and her mother Lynn Orsell are one another's support system. They're hoping Jax is able to get a bone marrow transplant, an expensive surgery that's only offered at the University of Minnesota. If he gets the treatment, Valik says his condition will improve by 80 percent.

Struggling with funds; Valik and her mother made a blog,, asking NY state leaders for help, and it has worked.

U.S. Senator Chuck Schumer and Congressman Paul Tonko both tweeted that they contacted Medicaid and will help the family navigate through the "red tape" so they can get Jax the treatment he needs.

Tonko tells NEWS10: "I will continue to work with federal and state agencies to ensure the family receives the appropriate level of care and assistance."

Jax with his wide eyes and curious nature, will need to get this treatment within the next 6 months or specialists say it will be too late for the treatment to be affective.

"More than anything I want to be a grandma someday," Valik said as she looked at her son.

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