ကမၻာေပၚမွာအရွားပါးဆံုးေရာဂါတမ်ိဳးျဖစ္တဲ့အရြယ္မတိုင္မီအုိမင္းတဲ့ေရာဂါကိုခံစားေနရတဲ့ဆမ္းဘန္းဟာ
ျပီးခဲ့တဲ့ေသာၾကာေန ့က ေသဆံုးသြားခဲ့ပါတယ္။ New England Patriots အေမရိကန္ေဘာလံုး အသင္းရဲ ့အမာခံပရိသတ္တစ္ေယာက္ျဖစ္ျပီးသူ ့ကိုဂုဏ္ထူးေဆာင္ အသင္းေခါင္းေဆာင္ အျဖစ္ခန္ ့အပ္ဖို ့မတို္င္မီတရက္အလိုမွာေသဆံုးသြားခဲ့တာျဖစ္ပါတယ္။
သူ ့ကိုဂုဏ္ျပဳတဲ့ အေနနဲ ့ ပြဲမစခင္ျငိမ္သက္ျပီးဂုဏ္ျပဳခဲ့ၾကပါတယ္။အသင္းသားေတြဟာ ဒီပြဲကိုဆမ္ဘန္းအတြက္ငါတို ့အႏိုင္ကစားရမယ္ဆိုတဲ့စိတ္နဲ ့ယွဥ္ျပိဳင္ခဲ့ၾကပါတယ္။
ဘန္ခံစားေနရတဲ့ Progeria ဆိုတဲ့ေရာဂါဟာျဖစ္ပြားသူအင္မတန္ရွားပါးျပီး ဒီေရာဂါေၾကာင့္အရြယ္ငယ္ငယ္မွာမွာေသဆံုးရပါတယ္။အမ်ားအားျဖင့္အသက္ ၁၃ႏွစ္အရြယ္ဆိုေသဆံုးၾကတာမ်ားပါတယ္။ဆမ္ဘန္းကေတာ့ ေဆး၀ါးေတြနဲ ့ကုသျပီး ၁၇ႏွစ္အထိေနႏို္င္ခဲ့ပါတယ္။
ကမၻာေပၚမွာ ဒီေရာဂါျဖစ္ပြားတဲ့ကေလးငယ္ ၂၅၀ေလာက္ရွိပါတယ္။
ဘန္းရဲ ့မိဘေတြကို သူဒီေရာဂါျဖစ္ေနေၾကာင္းသိရတဲ့ ၂၂လသားအရြယ္မွာ အရြယ္မတိုုင္မီအိုမင္းျခင္းေရာဂါကိုသုေတသနလုပ္ဖို ့Progeria Research Foundation ကိုတည္ေထာင္ခဲ့ပါတယ္။ဒီေရာဂါကိုကုသဖို ့နည္းလမ္းေတြရွာေဖြဖို ့အတြက္ ေဒၚလာ ၁၅သန္းမတည္ခဲ့ျပီးျဖစ္ပါတယ္။
the melting pot 4 U

ရွားပါးတဲ့ အရြယ္မတိုင္မီ အိုမင္းရင့္ေရာ္တဲ့ ေရာဂါေ၀ဒနာရွင္ အသက္ (၁၇) ႏွစ္ အရြယ္ တြင္ ေသဆံုး

13-1-2014 (Myanmar Digital Life Journal)

Sam Berns ဟာ အသက္ (၂၂) လသား အရြယ္ေရာက္တဲ့အခါ အလြန္ရွားပါးတဲ့ အရြယ္မတိုင္မီ အိုမင္းရင့္ေရာ္တဲ့ မ်ိဳးရိုးဗီဇ ေရာဂါကို သူ႔မွာ စစ္ေဆးေတြ႔ရွိခဲ့ပါတယ္။ သူဟာ အသက္ (၁၃) ႏွစ္သာ အသက္ရွင္ေနထိုင္ႏုိ္င္မယ္လို႔ ယူဆခဲ့ၾကေပမယ့္ အသက္ (၁၇) ႏွစ္အထိေနထိုင္ႏုိင္ခဲ့ပါတယ္။
Berns ဟာ အဆုိပါေရာဂါေၾကာင့္ ကိုယ္အေလးခ်ိန္က်တာေတြ၊ ဆံပင္ကြ်တ္တာေတြ၊ ၾကြက္သားနဲ႔ အရိုးျပႆနာေတြ၊ ႏွလံုး ေရာဂါ ေတြကို ရင္ဆိုင္တိုက္ခိုက္ေနရင္းနဲ႔ ျပီးခဲ့တဲ့ ေသာၾကာေန႔က ဆံုးပါးသြားခဲ့ပါၿပီ။ တစ္နည္းအားျဖင့္ Berns ရဲ႕ေရာဂါဟာ အသက္အရြယ္ႀကီးျမင့္မႈျမန္ဆန္လာတာျဖစ္ပါတယ္။ ဒါေပမယ့္ သူဟာ အလြန္ေပ်ာ္ရႊင္စရာေကာင္းတဲ့ ဘ၀ကို ပိုင္ဆိုင္ထားတာျဖစ္ပါတယ္လို႔ အျမဲေျပာေလ့ရွိပါတယ္။
“ ကြ်န္ေတာ့္ ဘ၀ မွာ ေရာဂါဆိုုးေၾကာင့္ အဟန္႔အတားမ်ားစြာ ရရွိခဲ့ေပမယ့္ လူေတြကို ကြ်န္ေတာ့္အတြက္ မခံစားေစခ်င္ပါဘူး။ ဒီေရာဂါနဲ႔ ပတ္သက္ၿပီး အခ်ိန္တိုင္း ကြ်န္ေတာ္ စဥ္းစားေနေလ့မရွိပါဘူး။ ဒီေရာဂါကို ရင္ဆိုင္ႏိုင္စြမ္း ကြ်န္ေတာ့္မွာရွိပါတယ္။ “ လို႔ Berns က စိတ္ဓါတ္ခြန္အားျမွင့္တင္ေပးတဲ့စကားေျပာပြဲတစ္ခု မွာ ေျပာၾကားခဲ့ဖူးပါတယ္။
Berns ဟာ ဆယ္ေက်ာ္သက္အရြယ္သာ ရွိေသးတာျဖစ္ပါတယ္။ သူဟာ အားကစား၊ ဂီတ နဲ႔ သူ႔သူငယ္ခ်င္း ေတြကို ခ်စ္တတ္ပါတယ္။ အထက္တန္းေက်ာင္းရဲ႕ ဂီတ အဖြဲ႔မွာလည္း ဒရမ္ တီးခတ္ခဲ့ၿပီး Eagle Scout ျဖစ္ခဲ့ပါေသးတယ္။
Berns ဟာ သတင္းဌာန ေတြရဲ႕ အင္တာဗ်ဴးေတြ အမ်ားအျပားကို လြန္ခဲ့တဲ့ ႏွစ္ပိုင္းမ်ားမွာ ျပဳလုပ္ခဲ့ရပါတယ္။ Academy Award အတြက္ ေနာက္ဆံုး ဇကာတင္စာရင္းမွာ ပါခဲ့တဲ့ HBO ရဲ႕ “Life According to Sam “ မွတ္တမ္းရုပ္ရွင္ ကို ၿပီးခဲ့တဲ့ ႏွစ္က ျပဳလုပ္ခဲ့တာျဖစ္ပါတယ္။
Berns ရဲ႕ မိဘ ႏွစ္ပါးဟာ Leslie Gordon နဲ႔ Scott Berns တို႔ျဖစ္ၾကၿပီး ႏွစ္ေယာက္စလံုး ဟာ ဆရာ၀န္ ေတြျဖစ္ပါတယ္။ သူတို႔ ဟာ Berns ရဲ႕ ေရာဂါ ကို တိုက္ခိုက္ဖို႔ အစြမ္းကုန္ ႀကိဳးစားခဲ့တာျဖစ္ပါတယ္။ ၁၉၉၉ ခုႏွစ္မွာ Progeria Research Foundation ကို တည္ေထာင္ခဲ့ၿပီး ေရာဂါ ျဖစ္ရတဲ့ အေၾကာင္းအရင္း နဲ႔ ကုသႏုိင္မယ့္ နည္းေတြကို ေလ့လာရန္ျဖစ္ပါတယ္။
Gordon နဲ႔ သူမရဲ႕ အဖြဲ႔ ဟာ ၂၀၀၃ ခုႏွစ္ မွာ အဆိုပါေရာဂါ ကို ျဖစ္ေစႏုိင္တဲ့ မ်ိဳးရိုးဗီဇ ကို ရွာေဖြေတြ႔ရွိခဲ့ၿပီး ၂၀၁၂ ခုႏွစ္ မွာ ကုသႏိုင္မယ့္ ေဆး၀ါး ကိုလည္း ပထမဆံုး ရွာေဖြေတြ႔ရွိခဲ့ပါတယ္လို႔ ေဖာင္ေဒးရွင္း ၀က္ဆုိက္မွာ ေရးသားထားပါတယ္။
Boston အားကစားအသင္းကို အားေပးသူျဖစ္တဲ့ Berns ဟာ အမ်ိဳးမ်ိဳးေသာ အားကစား ပြဲေတြမွာ အျမဲေတြ႔ျမင္ရေလ့ရွိပါတယ္။ Berns ရဲ႕ Talk Show ကို ေအာက္က YouTube လင့္ မွာ ၾကည့္ႏုိင္ပါတယ္။

http://www.youtube.com/watch?v=36m1o-tM05g

We won it for Sam! Patriots fans dedicate play-off win to teen who died of aging disease a day before he was to be honorary captain

We won it for Sam! Patriots fans dedicate play-off victory to brave teen, 17, who died of rare aging disease a day before he was due to be team's honorary captain

A teenager with a rare disease who was an unofficial mascot for the New England Patriots died one day before he was due to lead them into the playoffs as an honorary team captain.

The Patriots held a moment of silence for Sam Berns, 17, before Saturday's game which saw them beat the Indianapolis Colts, 43-22 -- and scores of fans later dedicated the victory to the teen whose inspirational approach to life won him thousands of fans.

The team also held a moment of silence for Berns before the game kicked off and shared a photo of Berns and Patriots owner Robert Kraft, whom Berns befriended in the months leading up to his death.
Berns suffered from progeria, a fatal genetic condition which causes premature aging. The average lifespan for patients is 13 years. Progeria is an extremely rare condition, affecting an estimated 250 children in the world.

Berns was also the subject of a HBO documentary released in October 2013 called 'Life According to Sam,' which showed him and his parents, Dr. Scott Berns and Dr. Leslie Gordon, look for treatments to help him and other children battling progeria.

Berns' parents founded the Progeria Research Foundation after he was diagnosed at 22 months old, the Boston Herald reports. It has raised an estimated $15 million to use to search for a cure for the disease. The documentary, one of 15 shortlisted for the Academy Award for Best Documentary, is believed to have helped with donations.

In October 2013, Berns continued to share his message of hope at the TEDxMidAtlantic2013 conference, in a talk called 'My philosophy for a happy life.'

Patriots fans also took to Twitter on Saturday night, expressing their condolences.

'My heart is heavy tonight. You are truly an inspiration Sam Berns and I am a better person because of your story. #Sam Berns,' Jami Haddock tweeted.

Others claimed that the Patriots' victory was for Berns.

'For you, Sam Berns. #Patriots,' tweeted Adam Kaufman.

Kraft penned a heartfelt tribute on Saturday, and shared his hopes for Berns' family.

'I loved Sam Berns and am richer for having known him,' Kraft said. 'He was a special young man whose inspirational story and positive outlook on life touched my heart. I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family. Together, they positively impacted the lives of people around the world in their quest to find a cure for progeria.'

Kraft also expressed his regret at not being able to see Berns honored at Saturday's game.

'I was looking forward to spending more time with Sam and his family. News of his passing came as a complete surprise,' Kraft said.

'It is another reminder that we can’t take anything for granted. Be sure to give your loved ones hugs and kisses and tell them how much you love them. My heart aches for his parents, Scott and Leslie, his aunt Audrey and the rest of Sam’s extended family. Words cannot express the sadness or the depth of sympathy I feel for them today.'

Berns was a junior at Foxborough High School, in Foxborough, Massachusetts. An Eagle Scout, he participated in marching band and baseball, ESPN reports.

Kraft became involved in Berns' life after reading about him in a local newspaper and invited him to a Saturday practice this past September, the website adds.

Kraft, so touched by the boy's condition, introduced Berns to the entire Patriots team. He reportedly even served as motivation for the team in its September 30-23 win against the Atlanta Falcons, N BC Sports reports.

'I asked Sam if he would be kind enough to give the team a little pep talk and tell them what they needed to do to get a win down in Atlanta,' Kraft told Patriots.com. 'He started telling them what they had to do to move [Falcons quarterback] Matt Ryan off the spot and get him to throw a few interceptions and how we could score.'

Berns is believed to have also touched the heart of quarterback Tom Brady.

'Brady was determined to be the player of the game down in Atlanta for Sam,' Kraft told the website. 'NBC gives a ball to the player who was most outstanding in the game and when I told Tom I was seeing Sam again, he pulled that game ball out of his locker, gave it to me and said, "I think Sam should have it."'

Berns later invited Kraft to a screening of 'Life According to Sam' in October. Kraft eventually donated $500,000 to the Progeria Research Foundation, according to ESPN.

Berns' family is requesting privacy until funeral arrangements are made, WCVB-TV reports. Condolesnces may be sent to the Progeria Research Foundation.