No parent should ever have to lose a child.
I write this after my wife, Amy, and I said goodbye to our son, Sam.
He passed away in June, just a few weeks shy of his 24th birthday.
As some of you know, Sam was born with a rare disease called Aicardi-Goutières syndrome. When doctors diagnosed him with this condition, they essentially told us to take him home and enjoy him, because he wouldn’t live long.
Boy, did Sam prove them wrong.
He outlived his diagnosis by more than two decades. And he filled that time with more joy, love and adventure than most people experience during lifetimes that stretch several multiples of that.
When Sam died, it stunned us. Yes, we knew that he’d faced and continued to face profound medical challenges. And that every day he lived, he was beating the odds.
Perhaps we fooled ourselves into thinking that, because he’d overcome so many obstacles, he would continue to do so. Or maybe, as Amy and I and our daughter, Sarah, sometimes tell ourselves, Sam just decided he didn’t want to burden us with his care any longer.
However, caring for Sam was never a burden. To the contrary, it was a privilege. He lit up our lives, and even months after his passing, we are still struggling to move forward without him.
Still, if we could find a silver lining in his loss, it’s been the extraordinary show of compassion and support we have received from across Oklahoma and the OMRF community.
Sam loved his new home state and so enjoyed being part of the OMRF family. Amy, Sarah and I are so grateful to everyone we’ve met in Oklahoma for accepting him from day one and for making the final
2 ½ years of his life so wonderful.
We hope that Sam’s beautiful spirit will serve as an inspiration – and that his life will remind us how important it is to strive to treat and cure human diseases like the one that afflicted him.
Andrew S. Weyrich
OMRF President
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Read more from the Summer/Fall 2024 issue of Findings
