Jackson Baldwin, the Johnstown infant with a rare skin disease, is headed to Minnesota on Friday to undergo testing in preparation for a potentially life-saving bone marrow transplant.
Baldwin, also known as Baby Jax, is leaving with his mother, Jessica Valik, 22, to visit the University of Minnesota Amplatz’s Children Hospital. Amplatz is the only hospital in the United States that can perform the procedure, which is in stage two of clinical trials. They are leaving on a flight donated by the Corporate Angel Network.
Valik said 7-month-old Baldwin will undergo four days of testing and evaluation to determine his suitability for the grueling procedure. “He will get a biopsy and a scope to check the blisters in his esophagus and he may get a central [intravenous] line in preparation for the bone marrow transplant,” she said.
An external advisory panel will review results and has authority to green light the procedure. “I have been told there is no reason Jackson wouldn’t qualify,” she said.
Once the decision is made, Baldwin will return to Minnesota for a two-week examination, provided he is not admitted to the hospital before then, said his mother. The procedures will test all his organs to ensure they can withstand chemotherapy and the bone marrow transplant itself.
The chemotherapy will kill all of Baldwin’s white blood cells and help ensure his body accepts the donor’s marrow. While in Minnesota, Valik will sign papers allowing the hospital to search a register for a donor. The marrow will be taken from the donor’s hip and infused into Baldwin’s body.
After the transplant, Baldwin will recover in the hospital for approximately 160 days. “It will take six weeks to determine whether he has accepted the donor cells,” Valik said.
During this time, she intends to remain by her child’s side, using proceeds from fund raisers to cover her costs. To date, she and her support network have raised $20,000. The money will cover lodging, medical expenses and costs to test a donor, she said.
Valik collected her latest donation Tuesday at Gloversville High School from the Gloversville Sports Booster Club and local high school sports teams. The groups raised $5,000.
Jackson suffered from a rare skin disease called epidermolysis bullosa that causes his skin to blister and bleed. He takes 20 different medications each day, including several painkillers.
His mother said she is still seeking permission from New York state Medicaid services to cover Baldwin’s post-transplant care and the cost of his bandages. Bandages alone cost about $3,000 monthly.
This is not her first go-around with the state over Medicaid. She had spent months trying to get state Medicaid to pay for the experimental bone marrow transplant, with little success. In late March, the state announced it would pay for the procedure, following intervention by the media, U.S. Sen. Charles Schumer and U.S. Rep. Paul Tonko.
David Valik, Jessica’s father, thanked supporters who helped raised the money for his grandson. “Hats off to all of them,” he said. “We hope everyone can keep Jackson in their prayers. They will be trying to find a match for Jax.”