Posts Tagged ‘ medical research ’

Have you ever wanted to make time stand still?

Thursday, October 17th, 2013

Courtesy HBO

Like any parent you’ve probably felt that way now and then—I know those twinges come more and more often as my kids get older. But I can’t imagine anyone who has yearned more desperately to stop the clock than Leslie Gordon and Scott Berns and their teenage son Sam, who are the focus of the wrenching but wonderful new documentary “Life According to Sam,” which premiers Monday, October 21 at 9 p.m. ET on HBO (check local listings).  Sam has progeria, an incurable genetic disease that speeds the body’s natural aging processes. By the time kids with progeria are 9, they resemble elderly people, with hair loss, muscle loss, brittle bones and the least visible but most dangerous symptom: the blood vessels of an 80-year-old. Virtually all of these children suffer heart attacks and strokes; on average they do not live past age 14.

Progeria is one of the rarest diseases; only 250 children worldwide have it. So drug manufacturers aren’t exactly racing to find a cure. That’s why soon after Sam’s diagnosis in 1998, Leslie and Scott, both doctors, founded the Progeria Research Foundation along with Leslie’s sister Audrey Gordon. (I first met Scott through the March of Dimes, where he is a senior vice president and I am a board member.) PRF quickly raised over $1 million and 4 years later had found the gene for progeria. The film chronicles the family’s race to study a drug therapy for the condition in a trial at Boston Children’s Hospital, even as they also slow down to savor the time they have together.

“I didn’t put myself in front of you to have you feel bad for me,” Sam says early on in the film. “I put myself in front of you to let you know that you don’t need to feel bad for me. This is my life. Progeria is part of it. It’s not a major part of it. It’s a part of it.”  The family’s ability to keep up with everyday life in the face of this disease is remarkable. Sam goes on a ride at an amusement park and cracks two ribs, but he also goes to school, plays sports and enjoys rock concerts. He is fragile but extraordinarily strong.

People “take time for granted,” says Leslie midway through “Life According to Sam.” Anyone, but especially other parents, will be awed by the family’s courage and amazed that they could spare one single moment of their time together to share their experience. “Everyday what I’m thinking of is how to save the kids and how to save Sam’s life,” says Leslie.

You will find yourself rooting passionately for Sam and his family and all the other kids in the trial, who come from around the world because the PRF is their best hope.  (Parents who loved “Miss You Can Do It,” from the same executive producer, Sheila Nevins, can expect to be similarly wowed by “Life According to Sam.”)

Sam allows himself to be documented in excruciating detail in his quest for a cure. His deed is a gift to the children with progeria who will continue to come after him and whose families already line up outside Leslie’s door, looking for a cure. But by putting themselves in front of the camera, Sam and his parents give a gift to all of us, a reminder of how fast the days pass. Watch it as a reminder of how very much we should value our fleeting moments together. But most of all, watch it to meet Sam, and to celebrate each passing birthday with him.

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