Sam Berns was diagnosed at 22 months.
Almost immediately after learning about their son’s illness, Leslie and Scott set to work finding a cure. However, along the way they encountered several obstacles: the lack of information about the condition and the few opportunities for “research and funding”.
Driven by a desire for answers and inspired by Sam’s case, they founded The Progeria Research Foundation, then, and until now, the only non-profit organization in the world dedicated to progeria research.
The strange disease he suffered from, rather than limiting him, led him to be a source of inspiration for specialists and other patients who, at that time, were in complete darkness regarding the information, diagnosis and advances of Progeria.
He is remembered for his excellent academic performance, which led him to acquire several student honors, and for serving as the leader of the percussion section in his high school band, as well as reaching the rank of Eagle Scout in the Boy Scouts of America.
The audiovisual product follows the life of the young man between the ages of 13 and 15, and goes far beyond progeria: it exposes without filters the reality of Berns at school, his role in the music group and his role as a companion to whom other students turn to for help with their math homework.
Without leaving aside, of course, the arduous struggle that his parents undertake to find a treatment for his illness.
For years, the foundation created by Leslie and Scott has tried to find a cure for genetic syndrome, so far without success.
Although treatment did not arrive in time enough for Sam, who died in 2014 of complications from the disease, The National Human Genome Research Institute, in conjunction with the Progeria Research Foundation, managed to determine that the condition is the product of a mutation in a gene called lamin A,.
On January 10, 2014, life ended for Sam Berns, a young man who, overcoming the challenges of his genetic condition, managed to leave an indelible legacy of love, hope and inspiration.
