Young Oklahoman leaves behind a legacy of understanding, joy

If you think of a spokesperson, it’s hard not to hear a voice. After all, it’s right there in the word itself: spoke, the past tense of “to speak.”

But every once in a while, there’s someone who becomes a spokesperson without ever saying a word. That was Sam Weyrich.

Sam was born with an extremely rare genetic disease called Aicardi-Goutiéres syndrome. The disease affects the white matter in the brain, leading to severe physical impairments.

When Sam was first diagnosed with the condition as an infant, the prognosis was bleak: His doctors predicted he wouldn’t live beyond his toddler years.

“They basically told us, ‘Go home and enjoy him,’” remembered Sam’s mother, Amy. Understandably, the news shook his parents to their core.

“You always think your children are going to outlive you,” said his father, Andy. But he and Amy quickly made a pact. “We decided we were going to try to be phenomenal parents to Sam during his time, however long that was.”

Thanks in no small part to the Herculean efforts of Amy, Andy and Sam’s older sister, Sarah, that time proved to be far longer than Sam’s doctors forecasted. And, just as importantly, that time proved far better than they could have imagined.

If you had the privilege of meeting Sam, who came to Oklahoma two and a half years ago when his father became the president of the Oklahoma Medical Research Foundation, you would have observed that he didn’t walk or talk. That he spent his days in a wheelchair, where his parents attended to his needs with great care.

But if this is all you saw, you would have been missing the point.

Amy and Andy learned to train their gaze on every dart of their son’s eyes, each twitch of his head, to understand his subtle, nonverbal language. It wasn’t that Sam wasn’t talking. It was simply that most of the world wasn’t listening closely enough.

“Sam taught us that everybody has a voice,” said Andy, “even if they can’t speak.”

As the Weyrichs grew to understand their son’s messages, they found he conveyed joy even in the tiniest of gestures. “Sam loved everybody. He didn’t distinguish,” said Andy.

Sam grew into a boy, a teen, and, finally, a young man. Along the way, his family discovered that he could not only handle new experiences; he loved them.

He skied. He rode horses. He swam. He rafted the rapids in the Grand Canyon, explored the streets of Paris, and canoed in Yellowstone.

And over the past year, Sam, his parents and his beloved service dog, Baby G, traveled nearly 8,000 miles around their new home state. They did it as part of 77 for 77, a gratitude tour of Oklahoma’s 77 counties in honor of OMRF’s 77th anniversary.

Everywhere Sam went, he served as an ambassador for OMRF. For people living with disease. For those who face profound challenges, yet who still find ways to live and enjoy life to its fullest.

Sam passed away on June 23, a few weeks shy of his 24th birthday. His loss has left a gaping hole in his family, and at OMRF.

Still, in the shadow of his death, the Weyrichs want us to remember the lessons Sam taught with his life.

“Take time to make the most of every moment, smile often, and laugh vigorously, as Sam did,” Amy said. “And never pass up the chance to talk to and spend time with individuals who are differently challenged. Like Sam, they have superpowers.”

Adam Cohen is senior vice president and general counsel at the Oklahoma Medical Research Foundation. He can be reached at contact@omrf.org.

This article originally appeared on Oklahoman: Young Oklahoman leaves behind a legacy of understanding, joy