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Changemaker: Former UW golfer creates Leo’s Lighthouse to raise awareness of son’s ultra rare condition

MEDINA, Wash. -- If you were to face a crisis, ever wonder who in your life would step up? Who would be on your team?

Golf is known to be an individual sport, but on a rainy day at Overlake Country Club in Medina, you will not find a closer team.

Scott Morrison played on the UW golf team more than 20 years ago. He went on to a successful career in fashion, married a model and had two beautiful boys.

But life, like golf, can be so humbling.

At 9 months old, when his son Leo wasn’t reaching the typical milestones, the Morrisons' had doctors run some tests.

“I remember Gracileia crying and telling me the news,” Morrison recalled.

That news was that Leo had something called Bainbridge-Ropers Syndrome.

It’s a genetic disorder so rare, it was only identified in 2012. To date, there are fewer than 200 children diagnosed worldwide.

“She said all the effects he may never walk, he may never talk,” Morrison’s wife Gracileia explained. “You think life is over, because your life is forever changed.”

“You have no understanding of what’s coming next,” Scott said. “Are there going to be seizures? Do these kids live?”

They’re questions that, because the syndrome is so rare, could not be answered by doctors.

So, they turned to Facebook -- reaching out to other families.

“Having this syndrome, it’s been lonely,” Tamara Hills from Lake Forrest Park said.  “Doctors and other care providers out there, who, it’s not that they don’t care, but they just throw up their hands and say, ‘I don’t know what to do with this kid.’”

Her 13-year-old son Benton was the sixth person in the world diagnosed with BRS. His impacts are more severe, leaving him with intellectual and physical disabilities.

“We’ve never met another child with Bainbridge Ropers,” Hills said.

Families who felt isolated are now connecting. With strength in numbers, Morrison launched Leo’s Lighthouse.

It’s a nonprofit meant to share their stories, spread awareness, and most importantly raise money for research.

“It’s a really scary and challenging place to think about your family being impacted by this disease, and there’s one person in the world who’s actually caring about it,” Scott explained.

He tracked down that one person researching BRS.

“People like Scott, they’re there as your biggest cheerleader,” Stephanie Beilas, with the Human Genetics Department at the University of Michigan, exclaimed.

Then Morrison and Leo’s Lighthouse raised $100,000, which is helping add a second research team at the University of Washington.

“By filling in different pieces of the puzzle, we can get a better picture of what the disorder is,” said UW Professor at the Center for Integrative Brain Research Kathleen J. Millen.

So, on this day, instead of draining long putts at Overlake for pride, Morrison’s old golf teammates and others played to raise money for Leo, and Benton, and families struggling with this rare disease.

“It just gives me hope,” Hills said. “Come up with that magic therapy for these kids to make their lives better, it’s a gamechanger for me.”

It’s hope, thanks to a father who turned his son’s devastating diagnosis into an opportunity to give kids a shot at a better life.

If you’d like to learn more or support the effort go to leoslighthouse.org.

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