A Johnstown baby has beaten medical odds and is responding positively to an experimental treatment to fight the rare, often-fatal disease that causes his skin to blister on contact.
Jackson Baldwin, also known as Baby Jax, appears to have fully accepted genetically compatible bone marrow and stem cell transplants and is finding that his skin is able to heal better and does not blister as often.
“The transplants worked. Jackson’s body has accepted it,” said his mother, Jessica Valik, 22. The boy is now home in Johnstown with his mother, having been released early from the hospital.
Jackson, who turned 1 year old Aug. 20, is one of 23 children to undergo the experimental treatment for epidermolysis bullosa. Approximately five of the children died during the pre-transplant process, which requires intensive radiation and chemotherapy treatments. The treatments kill off the recipient’s white blood cells and give the transplanted material a better chance to take hold, but also makes the recipient more prone to infection.
Jackson underwent the transplants about 100 days ago at the University of Minnesota Amplatz Children’s Hospital, the only facility in the United States offering the treatment.
Before the treatment, Jackson wore thick bandages from head to toe. The bandages cushioned his body from contact, which would cause layers of his skin to separate and result in intense pain. They also absorbed fluids that wept from the blisters and helped prevent infection. Valik said she spent thousands of dollars a month on bandages.
Now, half of his skin is free of bandages. And perhaps most important, the soft tissue inside his body, including the skin inside his mouth and his esophagus, is starting to heal, his mother said.
“I am seeing portions of his skin I was never able to see before,” she said. “He can experience new things others would take for granted. It does not hurt him anymore and he can play with toys.”
For the first time in his life, he can eat solid food, although sparingly. He is still being fed through a tube in his stomach, as solid food can cause blisters to his mouth, esophagus and stomach.
“His mouth is much better, he still gets a blisters now and then. But now he can take two spoons of baby food,” Valik said.
Her son, she discovered, also has a sweet tooth. “He likes the yogurt better than actual baby food. It is a struggle to get him to eat regular food,” she said with a laugh.
Another joy for them both is that Jackson is starting to talk and walk. He has been delayed in development due to the disease, which robs him of his strength and requires powerful pain medications all the time.
“Before, his life consisted of getting pain medications and formula and sleeping 20 hours a day. He could not do much, he could not play and be a normal baby,” Valik said. “Now he is up to 12 to 16 hours a day and is able to interact. He said ‘momma,’ he blows kisses and laughs.” His pain medications have been cut in half.
Three weeks ago, Jackson took his first steps. “It is very new,” she said, again with another happy laugh in her voice.
Jackson is not cured — there is no cure for epidermolysis bullosa — but the treatment will help him live as normal as life as possible, Valik said.
Mom and baby will travel back to Minnesota next week for some follow-up care and a booster treatment program. Depending on how Jackson reacts, his doctors could discharge him permanently from the program, allowing him to come home to live, she said. “The doctors are completely pleased with Jackson’s progress.”
His progress is so rapid that doctors are calling it historic for the program, Valik said. She had thought his recovery would take up to a year, and that she’d have to live in Minnesota during this period.
Still, the family is not completely concern-free. Valik and New York state Medicaid are still trying to resolve what costs of Jackson’s post-recovery treatment to cover. Currently, Medicaid is not paying for all the medications he must take, including one that costs $1,000 a month. Nor will Medicaid cover her expenses when she travels to Minnesota for Jackson’s follow-up care; he must visit the doctor five more times during the year. As such, she and her family are continuing fund raising efforts. They are accepting donations at: http://helpjackson.org/jacksons-blog.