January 14, 2014

"Sam Berns, 17, Public Face of a Rare Illness, Is Dead."

"Diminutive and bespectacled, Sam was a riot of enthusiasms: for math and science, comic books, scouting (he was an Eagle Scout), playing the drums and Boston-area sports teams."
In his TEDx talk, he spoke of his heart’s desire: to play the snare drum with the Foxborough High School marching band. The trouble was that the drum and its harness weighed 40 pounds. Sam weighed 50 pounds. His parents engaged an engineer to develop an apparatus weighing just six pounds. Sam marched.

15 comments:

Larry J said...

Progeria is extremely rare, happening to about one out of every 8 million people. In the US, that means approximately 40 people have progeria. With a global population of about 7 billion, about 875 have progeria.

I first recall learning of progeria from the case of Rabbi Harold Kushner's son, Aaron. The Rabbi authored When Bad Things Happen to Good People.

Ann Althouse said...

I find it amazing that there are that many people who have this disease.

m stone said...

AA: I find it amazing that there are that many people who have this disease.

Really? Why?

Not to answer my question, but, could it be that we are conditioned to people mentally and physically, becoming more childlike as the body ages and this reversal is disconcerting to anyone who has spent much time with the elderly?

Regardless the TED video of Sam is inspiring, not just because he remained upbeat, but that he seems so purely genuine. He seems without guile, a truly Godly trait.

Larry J said...

If the 1:8,000,000 figure is accurate, the rest is simple math. Those are still short of PowerBall odds (about 1:250,000,000) but very rare none-the-less. By way of comparison, the odds of being attacked by a shark are 1:11,500,000.

michaele said...

What a beautiful spirit and a loss to the world.

alan markus said...

Awesome post - watched the entire video. Last week you posted about "the world's ugliest woman" - as I watched this, I couldn't help but wonder what kind of raw material this has provided for some snarky assholes on the internet.

EDH said...

I thought the disease was more prevalent probably because I've seen him out and about several times but never quite sure it was the same person.

Even when dealt a short hand life is precious, and he was smart enough to make the most of the time he had.

Larry J said...

Progeria is an always fatal disease with no known cure. The oldest person I can find with progeria lived to age 26. From what I've read, most of them die in their teens.

Skeptical Voter said...

Way back in the way back; Walla Walla Washington--a town of 25,000 in the early 1950's, a sister of a friend of mine suffered from progeria. We were 8 or 9 years old, and she was 12.

But we--and she--took things as they came. I don't think there was much anybody could do for her at the time, so she simply lived out the few years allotted to her. She was probably a junior in high school when she died.


You play the hand you're given; she played hers as well as could be done.

Ann Althouse said...

It seems like a lot to me because it had looked as though anyone with this disease becomes famous, and there don't seem to be that many progeria celebrities.

But there's a defect in the math, because the likelihood is based on the number of births, not the current population, which includes all who continue to live. Since these people all die young, they are not in the same proportion to the population.

jimbino said...

RIP Sam,

but saying he was an Eagle Scout is no eulogy, seeing that Eagle Scouts still discriminate against gays and atheists. Would you have mentioned his membership in the KKK?

JoyD said...

May he rest in peace.

Your Husband said...
This comment has been removed by the author.
crispymainer said...

Watching the reaction of local athletes to his passing, including Bob Kraft, Patriots owner, show how he positively affected those around him. His charisma and earnestness belied his age.

@jimbino you are truly such a simple-minded individual that you cannot separate a non-profit's corporate policy from a child's desire to be challenged in a variety of ways? Your comment is purposefully hateful.
Sam clearly relished being with others. Shared experiences brought him joy and I suspect kept him one step ahead of the quiet moments that, looking back at my 16 y.o. self, would have filled me with dread and fear.

David Mandell said...

I read your post about Sam Berns and love his life message. Sam Berns was incredibly inspiring. I believe his message and life philosophy should be preserved. I have written a short film with a lead character based on Sam's philosophy. He is an 11-year old boy with terminal cancer. His bright spirit and positive outlook helps one of the characters through his illness. Just thought I'd share this with you.
https://www.indiegogo.com/projects/laugh-along-the-way-short-film/x/5401106

He will be missed, but his lessons will live forever.