JOHNSTOWN - City infant Jackson Baldwin, whose rare skin condition touched the Capital Region in February and March, is at home once again and awaiting a needed bone marrow transplant operation in Minnesota.
Meanwhile, the outpouring of sympathy and money to help the seven-month-old continues. Staff and students at Knox Junior High School on Friday conducted a "Laps for Jax" event at Knox Field - part of a monthlong series of fundraising efforts that will result in the school probably donating about $2,000 toward the boy's cause.
Jackson Baldwin - son of Jessica Valik and Brian Baldwin Jr. - has an extremely rare and devastating skin defect known as epidermolysis bullosa, or EB. Born at Nathan Littauer Hospital, the infant is very fragile, frequently gets blisters and requires a lot of care. In March, his mother and family were notified Medicaid will cover a part of a million-dollar bone marrow operation he needs to recover.
Article Photos
Knox Junior High students walk on the path near Knox Field as part of the Laps for Jax event for Jackson Baldwin on Friday.
The Leader-Herald/Bill Trojan
Without it, the little boy who is in constant pain could die.
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.
Jessica Valik said Thursday that she and Jackson recently were at Amplatz Children's Hospital at the University of Minnesota in Minneapolis, where the boy may eventually have his operation.
"When we were out there, he had a couple of procedures," the mother said.
Jackson actually underwent seven skin biopsies, one bone marrow biopsy and other medical procedures, including one to clear blockages in his throat.
She said her son hasn't had the bone marrow transplant yet, but they were at the hospital from April 9 to 16. He was treated for pneumonia and still is being treated now that he is back in Johnstown.
Valik said she is working with Dr. Jakuh Tolar at the University of Minnesota. She said the doctor is continually scanning the registry for the proper donor for his bone-marrow operation. Jessica said there has to be a "six-point match" before the operation is greenlit.
"We're waiting for the perfect match," Valik said.
Once she is notified there is a match, she said, she and her son have to go back to the University of Minnesota, and the boy would have to immediately undergo 10 days of chemotherapy. He then would undergo the bone-marrow transplant and will have 160 days of recovery at the hospital.
"It's difficult," Valik said, especially dealing with the financial burden of her son's health problems.
She said she came back to Johnstown recently to find $1,100 worth of "all-new expenses" that weren't covered under Medicaid. Valik said she stayed at the Ronald McDonald House in Minneapolis, but just the travel expenses from there to the hospital "adds up."
"We've come such a long way," Jackson's mother says.
She said her family is very grateful to all those who have raised money for her son. She said she and Jackson are due back in Minnesota sometime in May.
Knox Junior High School social studies teacher Jennifer Sweeney said Friday she was personally touched by Jackson's situation when she first learned about it through the media in March.
"Whoever saw it was very emotional," she said.
She said she worked with fellow Knox teacher Gloria Bruno, in charge of the student council, to come up with a monthlong series of fundraisers for Jackson at the junior high school in April. There was Friday's "Laps For Jax" event, but the staff and students also have been busy with fundraisers that have included a penny drive and sale of pink butterflies.
Michael Anich covers Johnstown and Fulton County news. He can be reached at johnstown@leaderherald.com.