Heroic teen’s death draws outpouring of love, support

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Sam Berns is shown in a scene from HBO's "Life According to Sam."

Sam Berns is shown in a scene from HBO’s “Life According to Sam.”

A football team owner, a world-renowned medical researcher and a lot of regular folks are expressing their love and respect for Sam Berns, the teen who on Friday lost his well-publicized battle against the premature aging disease progeria.

Berns, whose story was chronicled in an HBO documentary last year, died of complications from the disease, the Progeria Research Foundation said this weekend.

“I loved Sam Berns and am richer for having known him,” Robert Kraft, owner of Berns’ beloved New England Patriots, said in a statement. Kraft had invited Berns to serve as an honorary captain for the team in its playoff game Saturday.

Instead, a moment of silence to remember the bright, charismatic 17-year-old was held before the game.

“He was a special young man whose inspirational story and positive outlook on life touched my heart,” Kraft said. “I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family. … 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.”

Sam’s parents, Leslie Gordon and Scott Berns, co-founded the Progeria Research Foundation in 1999, shortly after Sam was diagnosed at 22 months of age. Sam died at age 17; kids with progeria live an average of 13 years.

“The entire PRF community mourns the loss of this remarkable young man who not only inspired PRF’s creation, but also touched millions of people worldwide,” the foundation said in a statement.

Francis Collins, director of the National Institutes of Health, called Berns a “courageous young man” and credited him with being a key player in the medical breakthroughs made by progeria researchers.

Twitter was alive with love notes, including:

• Mindy: “Rest in peace you made a difference in this world.”

• Sami Schmall: “No one has inspired me more than Sam Berns rest easy buddy you’ll never be forgotten”

In 2013, HBO broadcast Life According to Sam. Sam was the film’s star —and the face of the mysterious and extremely rare disease.

“I didn’t put myself in front of you to have you feel bad for me,” Sam says in the documentary. “I put myself in front of you to let you know you don’t need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It’s not a major part of it, but it is part of it.”

The genetic condition gets its name from the Greek word for “prematurely old.” The classic progeria, Hutchinson-Gilford Progeria Syndrome, is named after the physicians who first described it in England in the 1880s, Jonathan Hutchinson andHastings Gilford.

The kids are born looking healthy but begin to display many characteristics of accelerated aging at around 18-24 months. Kids who have progeria are mentally and emotionally the same age as their peers. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation and heart disease. Heart disease is generally the cause of the children’s death.

“Sam may have only lived 17 years, but in his short life he taught the rest of us a lot about how to live,” Collins said in a statement. “Medical research has lost one of its wisest and most endearing voices. Good night, sweet prince. You remain alive in our hearts.”

Courtesy USA Today

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