Jessica Valik knew something was wrong by the desperate tone of her newborn’s cries.
The young, single mother lay behind a curtain in a Nathan Littauer Hospital room, waiting for a look at what she had been told would be a hefty, healthy boy — her son, Jackson Baldwin. Instead, she listened to the shuffling feet of too many doctors and Jackson’s wails.
Later, she learned the reason for all the rushing and medical attention: a disease called epidermolysis bullosa.
“The skin was missing from his fingers,” she said. “They put an ID bracelet around his ankle, and it just took the skin off like wet tissue.”
Valik sat on the couch of her Johnstown apartment Sunday afternoon, describing how doctors told her Jackson, known affectionately as “Baby Jax,” wouldn’t make it to his first birthday.
They told her this in August 2011. A year and a half later, her son slept contentedly on her lap Sunday.
“It hasn’t been easy,” she said, which upon further discussion seemed an understatement.
EB is a very rare, often fatal, inherited connective tissue disease causing blisters in the skin. In layman’s terms, Valik said, the disease inhibits proteins, the “glue that holds your skin together,” from bonding and growing correctly.
As a result, her only child’s skin blisters and tears easily on contact. The infant spent his first eight months swathed completely in protective bandages with enough painkillers in his blood to knock out a grown man.
Besides its fatal nature, EB is complicated by its rarity. Doctors at Nathan Littauer sent the mother and son to Albany Medical Center, where they were directed to a series of specialty hospitals.
Valik, already frightened, was faced with a ticking clock, trying to find a treatment for her son before the illness reached its worst case scenario, while also convincing Medicaid to cover the cost of that treatment.
Thanks in part to a whirlwind of media attention, state officials decided to cover little Jax, and one day at a Presbyterian Children’s Hospital in New York City, Valik heard about a possible treatment. Starting in 2007, Amplatz Hospital in Minnesota pioneered an experimental combination of chemotherapy and bone marrow transplants shown to help EB patients grow healthy skin. It’s a risky option, with five of the 22 previous patients dying during treatment.
She told of overwhelming nervousness as she carried Jax onto a plane and headed to Minnesota.
“I couldn’t help wondering if I was doing the right thing,” she said. “I had to think of it as a risk worth taking.”
In the end, the treatment worked, and the bone marrow was accepted by his young body. They moved back to Johnstown in December and embarked on a long road to normalcy.
Now, eight months since the procedure, Jax is recovering nicely. He slept like a stone Sunday, not waking through a full interview.
“He’s busy making cells,” she laughed.
In her small, downstairs living room, she and her younger sister Samantha listed some of Jax’s major improvements.
“He’s happier now that he’s not on so much pain medication,” Samantha said, explaining Jax’s morphine doses are half what they used to be.
“I can pick him up under the arms now,” Valik said. “And he can lay his head on my arm without blistering.”
Bandages are slowly receding from the well-healed skin of his face and hands, but Jax still has a way to go. Valik has a lot of work to do, as well. Along with her son’s health, she has to worry about money.
Though Medicaid pays for the majority of medical treatment, she still drives to Albany Medical Center three times a week and pays for a portion of the cost of Jax’s bandages, thousands of dollars worth each month.
So far, a very successful online donation campaign at http://savejax.wordpress.com has covered the bulk of her share of the costs, but eventually she hopes to get a regular job and carry the load herself.
Valik is starting to get used to the idea of living a normal life.
“It’s the little things,” she said. “Yesterday, my brother came over with his 8-month-old daughter, and Jax played with her, just like a normal kid. I’m not used to that.”