From a Philadelphia gathering of progeria sufferers in 2006
Got word this morning that Sam Berns, the young man from Massachusetts whose struggles with progeria brought awareness to the rare disease, passed away. Moreso than the note that he was due to serve as an honorary captain for the New England Patriots last night, it called to mind a story I wrote about young people who suffer from the same disease.
Wanted to share that today as it’s one of those stories that stuck with me through the years:
If you’ve ever wondered what would happen if you gave pancakes to a pig, Seth Cook has the answers you need.
“First, he’d want syrup to put on them,” the 12-year-old explains. “But then he’d get all sticky, so he’d want to take a bath, a bath with bubbles, of course. Then, you’d have to find him a rubber ducky to play with.”
Now, it’s not as if Seth feeds breakfast food to animals that ultimately become breakfast food. These lessons come from a book he reads to a kindergarten class near his home in what his parents, Patti and Kyle, call “a logging town in the wilderness” of Washington state.
But as his parents and friends sit around the table laughing, he quietly concedes he also shares a more-important lesson with his youthful charges. Talking to the kindergartners, he says bashfully, in a high-pitched voice, “gives me a chance to talk about my disease.” That disease being Hutchinson-Gilford Progeria Syndrome, the rapid-aging affliction that claims its victims before they leave their teenage years, the genetic-based malady that has this 12-year-old already suffering from arthritis and commonly brings heart disease, diabetes and strokes by the age of 10. (Read more via this link)
Seth, too, passed away. But if I took one thing from getting to know him and others, if only for one day, it’s that while their time on Earth is limited, their capacity to inspire was limitless.