Faced with the odds: The Kirbo family’s battle with disease, and the community that helped

Published 3:44 pm Friday, March 1, 2024

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There are many situations one can face that require courage to overcome, many imposing and sometimes life-threatening challenges that some are unfortunate enough to have to face. Disease is one such challenge, and one Sloane and Carlyle Kirbo became all too familiar with, when their son Cloud was diagnosed with Krabbe disease in 2019.

Krabbe disease, an inherited genetic disorder, according to the National Institute of Neurological Disorders and Stroke, involves “harmful amounts of lipids (fatty materials such as oils and waxes) build up in various cells and tissues in the body and destroy brain cells.” The disease can have an onset as early as infancy, but may go undetected and only set in at a later age. Cloud was one of these late-onset cases.

“His was late-onset, so for the first three years, totally normal, met all milestones, he was totally okay,” Sloane said. “The problem is, the sooner it gets caught and you get transplanted, the better.”

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Cloud unfortunately found his sight, motor and speech skills severely impacted by the disease. After seeking counsel from several doctors and professionals on this rare condition, the Kirbos realized Cloud would need a stem cell transplant. While there is currently no cure for Krabbe disease, this transplant is the most effective treatment for halting its progression.

“Basically they wiped away his immune system,” Carlyle said, “‘killed as many cells as they could, so it wouldn’t reject the new cells.”

However, Krabbe disease was not the only problem the family had to be afraid of. Unsurprisingly, the treatments Cloud received were incredibly expensive, costing roughly $700,000 total.

Fortunately, this was not a problem they would have to face alone. The couple made efforts to raise the money needed, and the Bainbridge community rallied to help them. Donated proceeds from Uncle Bill’s Pizza, barbecue plate sales, and even a coyote hunt were just some of the ways the community sought to raise the necessary funds.

Cloud would ultimately receive his transplant in September of 2019, with the family traveling to Pittsburgh for the operation. All the while, signs reading “Pray for Cloud” went up around Bainbridge.

“We flew home,” Sloane recalled, “and my father-in-law picked us up from the airport, and he drove all throughout downtown, and everybody’s yards were full of Cloud’s signs… and we missed all of that. We had all the stuff on Facebook, we had all of our parents and family updating us, but to come home and see all of that, it still gives me goosebumps.” She added, “You can’t appreciate it until you see it.”

The family made it back to Bainbridge just before the COVID pandemic and ensuing shut-down, and have been very cautious since then about potentially exposing Cloud to anything.

Cloud, now seven years old, is homeschooled, and regularly visits Cairo for physical and speech therapy, and according to Sloan, enjoys his time with the therapists. “He loves those people, and they love him. They have such a special relationship,” she said.

Despite the harsh hand Cloud was dealt by the disease, he doesn’t let it get to him. “He’s never complained, he’s never asked why,” Carlyle said. “It’s amazing, he’s been so brave with it all.”

The family is now hoping to enter Cloud into a clinical trial involving a shortened form of chemotherapy, as well as gene therapy.

“They’ve had some really positive results,” Carlyle said, “where kids have made a drastic improvement.”

“While it’s not a cure,” Sloane added, “we’re hoping that it’s a bridge to that.”

What the Kirbo family went through is something that takes tremendous fortitude and courage, as well as support, the latter of which they received in spades from the community.

“I think that if there was a way for us to properly thank everybody, we would,” Sloane said, “but there’s no way we could thank everybody who did stuff for us… But if there’s one thing we could say to them, we would say ‘Thank you’, we appreciate them… because honestly, without this community, we wouldn’t have this extra time with him that we do.”