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'Life According to Sam' a rare look into life with rare disease

Clinical trials are critical for a drug to be given approval by the Food and Drug Administration for use in treatment plans across the United States, including in St. Louis. In some cases, this is much easier said than done; take those seeking a cure for the fatal disease known as progeria.

First, we’ll take a step back and explain progeria for those who may not be familiar with it. It is an extremely rare disease that affects only children, and there are only approximately 200 to 250 young kids with this disease in the entire world. The reason that this disease only affects children is that it is one in which the body ages much more rapidly than it should. In fact, children diagnosed with this disease live on average to the age of 13.

What makes finding a cure so tough for this disease, is that medications can only be tested on kids who have been diagnosed with it. So when a clinical trial comes along, it is important.

A documentary airs on Monday, Oct. 21 that details a drug trial for a drug that could prolong the life of kids with progeria. The hope is that the film will raise awareness and provide the path for publication of the clinical trial.

The documentary “Life According to Sam” follows around a 13-year-old boy and his family. That boy was a part of the drug trial and has, since filming, reached the age of 17. While he still struggles with the side effects, like breaking two ribs just from riding a roller coaster, he is a very active participant in life.

The boy loves playing street hockey and building block by block massive Lego worlds. He is a vibrant child that wanted to participate in the film and share his life. “You don’t need to feel bad for me,” he says to the audience in a preview clip. “I want you to get to know me. This is my life.”

It is amazing what children with a disability can accomplish. It is truly their courage and the support of loving family members that pushes them to great things, but for some families the money for necessary medical treatment just isn’t there. Supplemental Security Income is a federal benefit that simply provides funding to make ends meet so that kids diagnosed with an illness such as this progeria can show those around them exactly who they are.

Source: The Artery, “Documentary Follows Foxborough Family’s Search For Progeria Cure,” Erin Trahan, Oct. 20, 2013

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Alan E. DeWoskin, P.C.
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