2 Northern Va. brothers fighting rare disease set to begin treatment

Jacob Kulman, 6, and Eli Kulman, 8, are battling a rare genetic disorder. (Courtesy Kulman family)

Jacob and Eli Kulman aren’t all that different from other kids their age, but they’re facing a battle many others never will: The two are fighting a life-threatening genetic disorder called IPEX syndrome.

Parents Ali and Dave Kulman said that dealing with the illness has been tough at times for the boys.

“They have some hair loss, severe allergies. If we want them to live past the age of 30, they need a bone-marrow transplant,” Ali Kulman said.

Jacob Kulman, 6, and Eli Kulman, 8, live in Falls Church, Virginia, and both are rambunctious. They love school and, so far, they’ve stayed strong throughout the journey.

The boys will be getting bone-marrow transplants at a Philadelphia hospital in November and will have to stay nearby for months for follow-up appointments.

The family will be relocating to make it work, but said it will be a difficult time financially as they also face job cuts during the COVID-19 pandemic.

The Children’s Organ Transplant Association has stepped in to help. They’re trying to raise $100,000 and, so far, they’ve raised $35,000 to help cover the family’s expenses.

“We wouldn’t be able to sign a lease in Philadelphia without the Children’s Organ Transplant Association,” Ali Kulman said.

One of the biggest challenges is keeping the boys healthy during a pandemic until then.

“We don’t go anywhere; we have our food delivered. The only place we’ve been is doctors appointment,” added Ali Kulman.

Ali and Dave Kulman said their biggest hope is that more people will donate bone marrow.

“We’re really lucky that they found such a good match for our boys,” Ali Kulman said. “Become a donor. There’s a bone-marrow registry called Be The Match; donating could save somebody’s life.”

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