JOHNSTOWN - Baby Jackson Baldwin received a bone-marrow transplant operation last week that could save his life.
"Everything went very, very smoothly," Lynn Orsell, the boy's grandmother, said Monday from Minnesota. "His prognosis is a lot better."
She said the operation on Baby Jackson, who suffers from a rare skin defect that causes life-threatening blisters, was done Friday by Dr. Jakub Tolar at the Amplatz Children's Hospital at the University of Minnesota.
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Baby Jackson Baldwin of Johnstown receives treatment at Amplatz Children’s Hospital at the University of Minnesota while his mother, Jessica Valik, watches over him.
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The baby, who is nearly 11 months old, suffered a 105-degree fever over the weekend, but was doing slightly better Monday, Orsell said.
Baldwin, the son of Jessica Valik of Johnstown and Brian Baldwin Jr., was born with a skin defect known as epidermolysis bullosa, or EB, which often is fatal. Orsell said the boy may not be discharged until February.
The baby underwent five days of chemotherapy and one full body session of radiation to prepare his body for Friday's transplant.
Orsell said the "next big milestone" for her grandson will be in about three weeks, when doctors check Jackson's bone- marrow biopsy.
"That will be the first indication when you know his body accepts the bone marrow from the donor," she said.
In the meantime, Jackson faces a long road to recovery, as his health possibly gets worse before better.
"His health will go down pretty quickly," Orsell said.
Born at Nathan Littauer Hospital Aug. 20, the infant is fragile, frequently gets blisters and requires a lot of care.
In March, his mother and family were notified Medicaid will cover part of the million-dollar bone-marrow operation he needs.
The disorder causes blisters to form on the blond-haired boy's body. He loses the skin on his body internally and externally.
The disorder makes skin so fragile that the slightest friction can cause severe blistering. Treatment involves a regimen of daily wound care and bandaging to prevent additional skin injury. One out of 50,000 children are born with EB.
Orsell said Jackson's bone-marrow transplant operation to help combat the EB was only the 22nd worldwide.
She said five of those 22 died, often early after the operation.
Orsell said of those patients who survived the operation, they have "done very well" healthwise.
Valik couldn't be reached for comment.
In March, Jackson's mother said her son's "prognosis is he probably won't live." But she also said if he got the bone-marrow transplant, he could get 80 percent better immediately and grow new skin.
"Right now, things are going great," Orsell said Monday. "We want the community to know how grateful we are."
Area groups have helped raise money for the boy. Further information can be obtained through the website helpjackson.org.
Checks also may be sent to Jessica Valik, 25 S. William St., Apartment 2, Johnstown, NY 12095; or to her father, David Valik, Route 8, P.O. Box 29, Hoffmeister, NY 13353.
Michael Anich covers Johnstown and Fulton County news. He can be reached at johnstown@leaderherald.com.