Chasing a cure: Golfers rally around 3-year-old with rare genetic disorder

Small But Strong

WARWICK, R.I. (WPRI) ─ In the game of golf, it seems you’re always up against obstacles like bunkers, sand traps, and water hazards.

But on a sunny day in May at the Valley Country Club in Warwick, getting closer to the pin was not nearly as important as getting closer to a cure for Kyphoscoliotic Ehlers-Danlos Syndrome.

Golfers gathered to show their support for Chase Callahan, who was diagnosed with the rare genetic disorder just days after he was born.

“Within an hour of him being born, the nurse grabbed him, starting doing CPR because his lips were turning blue,” Michael Callahan, Chase’s father recalled.

Courtesy: Michael and Kate Callahan

Chase spent several days in the NICU before he was diagnosed with the disease, which makes him more prone to scoliosis, joint dislocations, and vascular issues like aneurysms.

The doctor told Michael and his wife, Kate Callahan, that Chase is one of only 60 known cases in the world.

Even though the odds are stacked against him, Chase continues to prove his doctors wrong.

“The doctors told us he wouldn’t walk until between 2 and 7 years old,” Michael said. “He walked two months prior to turning 2 years old. He is determined in every sense to do everything that the doctors say he will never be able to do.”

Courtesy: Michael and Kate Callahan

“We had no idea what life was going to be like for him,” Kate added. “To see him come this far is just phenomenal.”

More than 100 golfers gathered for the inaugural Chase For A Cure Golf Tournament last month and raised more than $30,000 for the Marfan Foundation‘s research grant program.

While Chase doesn’t suffer from Marfan Syndrome specifically, the grant program is working to find a cure for all types of connective tissue disorders, including Kyphoscoliotic Ehlers-Danlos Syndrome.

Until there’s a cure, Chase’s parents must constantly find a balance between protecting him and letting him be a kid.

“You can’t let him go in the bouncy house,” Michael said. “But at the same time, you can let him go enjoy time with friends from the daycare or whatever it might be. You really have to take each day one day at a time.”

High-impact sports like baseball and basketball are too risky for Chase, but Michael hopes his son will be interested in playing golf with him someday.

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