Author Topic: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17  (Read 596 times)

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Offline happyg

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Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« on: January 12, 2014, 08:12:56 PM »
By GILLIAN MOHNEY
Sam Berns died Friday from complications of the disease. Progeria is a fatal genetic condition that causes rapid aging.

He was diagnosed at just 22 months old. His parents, Dr. Leslie Gordon and Dr. Scott Berns, reacted to his diagnosis by creating the Progeria Research Foundation in 1999 to find the cause of the disease and a cure.

The foundation announced Sam's death in an online statement today.

"The entire [Progeria Research Foundation] community mourns the loss of this remarkable young man who not only inspired [Progeria Research Foundation]'s creation, but also touched millions of people worldwide," read the statement.

The disease is extremely rare, affecting approximately one child out of every 1 million to 2 million births, with an estimated 250 children suffering from the disease worldwide.

In an interview with ABC News last year, Sam said he hoped his mother would one day be able to stop researching.

"I kind of just want my mom to be done with progeria for her sake, because my mom will keep working forever until progeria is cured," he said.

After Sam was diagnosed, Leslie Gordon started to research the disease and found the gene that carried the disease and the abnormal protein that is higher in children with Progeria.

Clinical trials for a drug usually used to treat cancer appeared to show promise slowing down the aging process in progeria patients.

The Triumph of Sam Berns, Progeria and Math

However, Gordon was simply trying to save her son and others with his condition.

"He gets off the bus, it's a moment. And I treasure it," Leslie Gordon told ABC News last year. "Every moment in and of itself is special to me."

Last year Sam was the subject of an HBO documentary called "Life According to Sam," in which filmmakers followed his life and his parents' research for three years.

After the documentary, Sam was able to raise awareness about the disease and participated in a TED Talk last year about old medications for new diseases.

He also became close with Patriots Chairman and CEO Robert Kraft, who said in a statement today: "Words cannot express the sadness or the depth of sympathy I feel for [his family] today."

One Family's Fight Against Progeria

Kraft said he had planned on asking Sam if he wanted to be honorary captain of an upcoming Patriots game, when he heard he had died.

"I loved Sam Berns and am richer for having known him. He was a special young man whose inspirational story and positive outlook on life touched my heart," Kraft said.

While most children with the disease are expected to live only until age 13, Sam Berns turned 17 last year.
http://abcnews.go.com/Health/sam-berns-boy-aging-disease-progeria-dies-17/story?id=21499994

Offline Rapunzel

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #1 on: January 12, 2014, 10:32:48 PM »
RIP
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Offline Atomic Cow

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #2 on: January 12, 2014, 11:03:57 PM »
God can be cruel.

I'm not going to get into a theological debate, but God didn't do it.
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Offline musiclady

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #3 on: January 13, 2014, 09:35:56 AM »
I'm not going to get into a theological debate, but God didn't do it.

Thank you.  To the point, and loaded with truth.

HE didn't.
Character still matters.  It always matters.

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Offline DCPatriot

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #4 on: January 13, 2014, 09:52:53 AM »
I'm sure He'd gotten credit for curing the kid though.

 :beer:
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Offline alicewonders

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #5 on: January 13, 2014, 09:59:10 AM »
Everything I've heard about this kid was that he never felt sorry for himself - he was a remarkable person.  I think he would be the last person to blame God for his disease.  We could all learn a lot from him. 
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Offline musiclady

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #6 on: January 13, 2014, 10:11:37 AM »
I'm sure He'd gotten credit for curing the kid though.

Well, yes. 

If God had chosen to miraculously heal him of a disease that was the result of living in a fallen world, due to the choices of human beings, then He would have gotten credit.

That would also have been the truth.
Character still matters.  It always matters.

May 3, 2016 - the day the Republican party left ME.  I am now without a Party, and quite possibly without a country.  May God have mercy!

Offline musiclady

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #7 on: January 13, 2014, 10:15:11 AM »
Everything I've heard about this kid was that he never felt sorry for himself - he was a remarkable person.  I think he would be the last person to blame God for his disease.  We could all learn a lot from him.

The bottom line here, alice......

This kid led a remarkable life.  He understood his condition, but also understood that he could do many things in life, in spite of it.

He didn't feel sorry for himself.  He didn't blame anyone.

So, attempts to distract from the point, notwithstanding, he deserves our thanks for being an example.  We gripe at little ailments and setbacks, and Sam, in spite of massive physical problems, lived life to the fullest.
Character still matters.  It always matters.

May 3, 2016 - the day the Republican party left ME.  I am now without a Party, and quite possibly without a country.  May God have mercy!

Offline EC

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #8 on: January 13, 2014, 10:20:44 AM »
From the FB timeline of a friend (A in this post). I edited the names out for privacy sake:

H: My fiance is one of his teachers. He was a remarkable person who made a huge positive impact on everyone he interacted with.
January 11 at 10:37pm · Like · 1

M: RIP, young man. You've been an inspiration to us all, keeping a positive outlook on life even with all your struggles.
January 11 at 10:46pm · Like · 1

A: H, please tell your fiance I'm sorry for his (and your) loss. As a teacher, and as one of Sam's many fans.
January 11 at 10:49pm · Like
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Offline alicewonders

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #9 on: January 13, 2014, 10:59:48 AM »
God works in mysterious ways.  Sam Berns showed us how to handle adversity with dignity and grace - and how to see good in what we might think is bad.  How to always look forward and surround yourself with good things and not dwell on the bad stuff.

I don't think we were put here on this earth to live a fairy tale life.  I don't think God is a fairy godmother that grants our every wish.  I think we were put here to learn how to deal with real life and become stronger for it - to look past our own suffering and see the suffering of others...and to try to help our fellow man.  Only when we do that, will we learn to transcend our own suffering and discover the real meaning of life.

I think Sam Berns learned well.  RIP Sam, you accomplished much during your short life. 
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We told you Trump would win - bigly!

Offline musiclady

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #10 on: January 13, 2014, 11:09:40 AM »
 
God works in mysterious ways.  Sam Berns showed us how to handle adversity with dignity and grace - and how to see good in what we might think is bad.  How to always look forward and surround yourself with good things and not dwell on the bad stuff.

I don't think we were put here on this earth to live a fairy tale life.  I don't think God is a fairy godmother that grants our every wish.  I think we were put here to learn how to deal with real life and become stronger for it - to look past our own suffering and see the suffering of others...and to try to help our fellow man.  Only when we do that, will we learn to transcend our own suffering and discover the real meaning of life.

I think Sam Berns learned well.  RIP Sam, you accomplished much during your short life.


 goopo
Character still matters.  It always matters.

May 3, 2016 - the day the Republican party left ME.  I am now without a Party, and quite possibly without a country.  May God have mercy!

Offline musiclady

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #11 on: January 13, 2014, 02:12:49 PM »
Well, hot flap doodle, I want that press agent!

All you need to do is go back to what you already know about God, His creation, sin, miracles and truth, readily available to you in Scripture.

I haven't said anything here that you don't already understand............ your cynicism notwithstanding.
Character still matters.  It always matters.

May 3, 2016 - the day the Republican party left ME.  I am now without a Party, and quite possibly without a country.  May God have mercy!

Offline EC

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Re: Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17
« Reply #12 on: January 13, 2014, 02:17:13 PM »
Well, hot flap doodle, I want that press agent!

God chose a different path.

Sam Berns testified with his life. He had a shitty life. Yet he was usually cheerful and upbeat about it.
The fastest way to a man's heart? Inch to the right of the breastbone, between the fourth and fifth rib.

Every time I start to feel boring, I remember there is a monthly magazine devoted to elevators.

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