Progeria special ‘Life According to Sam’ hits HBO Oct. 21Written by Vicki L. Kroll | | email@example.com
Love is a powerful motivator.
When Drs. Leslie Gordon and Scott Berns learned their 22-month-old son, Sam, had progeria in 1998 and that there was no research being conducted on the rare disease, they went to work.
With help from friends and colleagues, the family created the Progeria Research Foundation, the only nonprofit dedicated to treating and finding a cure for the fatal genetic condition characterized by rapid aging.
Their race to save their son is the subject of “Life According to Sam,” a documentary that will debut at 9 p.m. Oct. 21 on HBO. It will also air at 8 p.m. Oct. 23.
“We’ve had a lot of media interest in telling the story of the founding of the Progeria Research Foundation and Leslie being the mom and the whole family getting involved,” said Audrey Gordon, president and executive director of the foundation as well as Sam’s aunt.
“[HBO is] well-known for its quality programming and has a worldwide reach, so we felt that it was the best place for us to tell our story. And so we went to HBO and they said yes, they brought on board the best directors that we could ever imagine, and they filmed for about three years.”
Oscar-winning directors Sean Fine and Andrea Nix Fine made the 94-minute movie that has been receiving rave reviews since it premiered at the Sundance Film Festival in January.
It was at that showcase that Audrey first saw “Life According to Sam.”
“What I really loved about it is it’s not a sad story of a child who has this really difficult disease; it’s about hope and family and love and life and determination. It’s completely inspiring,” she said.
“And it’s the kind of movie every parent can relate to, like Leslie says, one of her quotes is ‘Mothers can do anything.’ And she’s motivated by love for Sam and love for all the children.”
Those children include Kaylee Halko, 10, of Monclova and Carly Kudzia, 3, of Whitehouse. They are two of the 22 kids in the country who have progeria; both are participating in the foundation’s triple drug trial.
“I’m relatively certain that Leslie and Audrey work constantly to move us closer to a cure for Sam, and for Carly and Kaylee,” said Heather Kudzia, Carly’s mom. “They are possibly the only people on the planet that I would trust to work as hard as, if not harder, than me. The Progeria Research Foundation mantra is ‘Together we will find the cure,’ and I believe it.”
“We appreciate everything that Sam and his family have done; without them, there would be no hope for the children with progeria,” said Tim Halko, Kaylee’s dad. “It is because of them that the gene was found that causes progeria, and they are the ones leading the research.”
Both families have met Sam, who will turn 17 this month.
Heather said she was struck by his star quality.
“He’s confident, articulate, funny and inspirational,” she said. “The idea that Sam pursues his passions — and is happy and successful doing so — is so reassuring to [my husband] Ryan and I. The road ahead for Carly is largely unknown, but it helps to know that Sam — and Kaylee — have been there first and are not letting progeria get in the way.”
“We met Sam probably about seven years ago at the National Institutes of Health. Kaylee was only 3 at the time, but she and Sam had a lot of fun together,” Tim said. “Like all the kids, he was full of life and a lot of fun to be around.”
These children seem to have incredible spirit. The world got a glimpse of that in TLC’s “6 Going on 60,” a 2009 documentary that featured two girls, including Kaylee.
“The children are very courageous and inspirational. They drive me every day to do what I do,” Audrey said.
Work at the foundation has been in overdrive. Since 1999, the LMNA gene that causes progeria has been discovered; a test to determine if children have the disease was established; a cell and tissue bank was started; and funds were raised for two drug trials.
Last year, results from the first drug trial showed children receiving treatment improved in at least one of three areas: weight, bone structure and the cardiovascular system.
“What started off as a really small core group has just mushroomed into thousands of people all around the globe,” Audrey said. “It’s just been a remarkable outpouring of support that has really caused us to go so far so fast.
“And I just want to keep on; I’m here till we find a cure.”