April 30, 2014 - 6:58pm
A few months ago I heard about a teenage boy named Sam Berns who was all over the news and who had passed away from a rare and accelerated aging disease called Hutchinson-Gilford Progeria Syndrome.
Sam was 1 per 8 million of live births that lead to this extremely rare genetic disease with symptoms resembling aspects of aging starting very early in life and can include wrinkled skin, fragile bodies, small faces with larger heads, recessed jaws and pinched noses, limited growth and full-body hair loss. While children with progeria have normal mental and motor development, it’s some of their physical and internal challenges that make it difficult managing with the disease. Children with progeria typically live to their mid-teens to early twenties.
I had never heard of the disease nor did I know anyone who had lived with it.
For people who knew Sam personally, and otherwise, he was considered a spirited and gutsy kid who was full of life. Ironically, he was wise beyond his years. This kid took the bull by the horns and did things that his body didn't always enable him to do. He often found a way to make it work. His experience with the disease was featured in an HBO documentary called "Life According to Sam," which I encourage everyone to watch. He also spoke at a Ted Talk conference and floored people with his candor, emotion and honesty.
Sam's loss will be felt my many for years to come. But what he leaves behind is insight, truth and empowerment for the disease progeria.
For progeria, there are no approved treatments to cure the disease or even to slow down the progression. Therefore, the fight against the disease must continue.
The Penny family understands this fight all to well. Laura and Ian, parents of Zoey, learned of their daughter's diagnosis with progeria during her infancy.
Zoey’s pediatrician directed Zoey's parents to the Progeria Research Foundation, which happened to be founded and run by Sam's parents Dr. Leslie Gordon and Dr. Scott Berns. It was here that Zoey's family started to network and meet other families going through their very experience.
With little promise in current medical advancements, money needed to be raised for research for progeria and for Zoey's medical care. With support from The Progeria Research Foundation, and countless others, Team Zoey (www.teamzoey.com) came to life.
Years later, after the alarming diagnosis and fear of the unknown for their child, Zoey's family has established a network of supporters both friends and family, with funds being raised to help Zoey and other children with progeria.
Zoey is a very happy, smart and boisterous child who loves to sing and play. Despite progeria, she is a funny girl who is full of life. While she does have some physical limitations she always finds her own way, similar to what Sam experienced in his life.
Everyone who meets Zoey, falls in love with her. She's a free spirit. While she does get tired frequently, she rarely wants to sleep and is a high-energy spirit whose enthusiasm is infectious.
Zoey’s family was anxious to get her into a clinical trial, as they could not sit by and do so little medically while the disease took hold of their child’s life.
Team Zoey will never stop fighting for progeria. They say, "it’s tiring, it’s hard and it’s emotional.” This is their normal and their mission to find a cure and encourage support and research is their constant.
Thanks to all their efforts and connections, Zoey has since been able to join a clinical trial called Triple Trial Expansion. Even more, Team Zoey has since became the New Jersey Chapter for the Progeria Research Foundation. They often hold events to raise funds to pay for Zoey's medical expenses and for other new children entering the trial.
Every little bit counts in the fight against progeria. Please join us in the quest for necessary research for this disease and make a donation, share your story and get connected to this emotional and powerful cause.
Disclosure: The company I work for, Green Room Communications, does pro bono public and media relations work to support Team Zoey and this important cause, progeria. Please know, I have not been paid to write this blog post, but want to disclose that we are in connection with the organization to support and raise much-needed awareness.