STATESVILLE — A year and a half after getting a life-saving bone marrow transplant, 4-year-old twins Kolby and Kyle Easterling, who have connections to the Jonesville area, continue to require weekly visits to the doctor and special medications for their disease, Adrenoleukodystrophy.
The transplants, completed April 25, 2014, at Duke Hospital in Durham, were successful, said Kayla Easterling, the boys’ mother who now lives in Statesville. Easterling grew up attending Bible Baptist Church in Jonesville where her grandmother, Virginia Finney, is still a member.
The church will be holding a hot dog dinner and gospel singing fundraiser Saturday from 11 a.m. to 4 p.m. No charge is required for the food, but all donations are accepted. Monies raised will help with Easterling’s expenses traveling back and forth to Wake Forest Baptist Medical Center in Winston-Salem each week, sometimes multiple times for doctor visits and receiving medication, which is a special compound local pharmacies are unable to make, she said.
“We had gotten home from the hospital in late September last year, and they still have very low immune systems and have to stay isolated from other people. It is easy for them to get sick. They can’t have the vaccinations yet, so they can’t attend school. We have a person that comes weekly for home therapy,” said Easterling.
Due to the medical needs of the boys, who were diagnosed at 1 month old, she’s been unable to work. “We still have to go to Baptist a lot,” she said.
Kolby is adjusting well to his donor’s bone marrow cells, but Kyle’s body is taking much longer to adjust so he still battles a lot of side effects and is required to take more medication to fight his body rejecting the transplant.
“The medicines are to slow the growth of the marrow cells so they won’t attack his body. He has rashing inside his gut and skin rashing,” Easterling said.
“Their bodies will eventually adjust,” she said, noting that Kolby’s portacath will likely come out during his next appointment and she is hopeful he’ll be able to start school a couple of times a week next year. “But Kyle’s a little farther behind him.”
She explained that transplants can take up to a year or more to adjust, and they required chemo afterward.
While Easterling had lived in Winston-Salem, she relocated to Statesville to be closer to family who can help her care for her sons. “It helps if one gets sick and I have to take the other to the hospital,” she said.
Disability helps pay for the boys’ medical bills, and when they turn 18, they will have to apply for full disability, said Easterling. Her biggest expenses are the gas driving back and forth and other things disability won’t cover.
“The transplant is not a cure for the disease, it just stops the progression,” explained Easterling. “The donor cells halt the disease. When they get older, we won’t know what problems they’ll face. There have not been that many successful transplants or kids survive that long.
“We are very fortunate to have a successful transplant. We are very blessed and thankful for a successful transplant,” she said.
Bible Baptist Church is located at 5933 U.S. 21 South, Jonesville.
Wendy Byerly Wood may be reached at 336-258-4035 or on Twitter @wendywoodeditor.