Updated 05/31/2012 09:04 PM
Johnstown baby gets a second chance
A Fulton County baby battling a painful disease is getting ready for what could be a life changing treatment. Our Maria Valvanis has more on the family's fight to get Baby Jax a better life.
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FULTON COUNTY, N.Y. -- "He could wear shoes one day. He could eat by mouth one day versus through a feeding tube. He'll be able to run around and play," said Jackson's mother, Jessica Valik.
These are just some of the dreams Jessica Valik has for her nine-month-old son, Jackson. The baby boy has been living with pain equivalent to third degree burns, caused by the disease, Epidermolysis Bullosa, or EB.
"I don't want to see him in pain. That hurts. It hurts a lot. And just knowing no matter what I do, I can't comfort him, it's tough," said Valik.
"I might have an owie or a boo boo, that I'm a big baby over and I think of him and think wow, look at what he goes through on a daily basis," said Jackon's grandmother, Lynn Orsell.
The rare skin disease causes blisters to form on Jax, all over his body, forcing him to live life indoors, wrapped in bandages from head to toe. But that could all be changing. The family is heading off to Minnesota to start prep work for a bone marrow-stem cell transplant that will change baby Jax's life forever.
"If we don't do this, the prognosis is not good and chances are he won't make it much past a year," said Orsell.
And that prognosis gave the family the determination to fight for more than a million dollars in funding. Thanks to a combined effort of fundraising and Medicaid support, Jax can get the treatment he needs. But the financial worries don't end there.
"There's so, so much that's not covered and so many limitations on what is covered," said Orsell.
"To put it into perspective, one month total of his bandages comes to about $5,000," said Valik.
Regardless of all the difficulties laying ahead for Valik, she tells us her main goal is to give Jax a normal life. She just wants him to be able to play outside at nearby parks like all the other kids.
"He'll be able to run around and walk, maybe he'll actually want to crawl. He'll be able to eat his birthday cake," said Valik.
If you want to know more about what you can do to help baby Jax, visit helpjackson.org and savejaxnow.com.