Progeria: Sam Berns And Music
The documentary, “Life According to Sam”, is the journey of Sam Berns, his parents Dr. Leslie Gordon and Dr. Scott Berns, and their journey to find a cure for the rare premature, progressive, aging disease, Progeria. “Life According to Sam” wins a Creative Arts Emmy for “Exceptional Merit in Documentary Filmmaking” in August 2014.
Progeria is a fatal genetic condition that rapidly ages certain systems of the body. All children with Progeria die of the same heart disease that affects millions of normal aging adults – arteriosclerosis. The intellect of children with Progeria is unaffected despite physical changes in their young bodies. The disease affects 1/4,000,000 children. There are approximately 200 – 250 children living worldwide with Progeria today.
Sam is diagnosed with Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), in 1998 at the age of 2. Little is known about the disease in 1998, and most children died at an average age of 13 due to a stroke or a heart attack. When told of the diagnosis and prognosis, Sam’s parents didn’t accept this. It is Sam’s parents who work relentlessly to pursue treatments and a cure for Progeria. Dr. Gordon, with the support of her husband, a pediatric ER doctor, devotes herself and her career to studying the disease. The Progeria Research Foundation (PRF) is created in 1999 and raises $1.25 million within 4 years, for the purpose of identifying the gene that causes the disease. PRF is the only non-profit organization solely dedicated to Progeria treatments and to finding a cure.
Sam passes away in January of 2014. Sam was a junior at Foxborough High School in Massachusetts and a member of the percussion section of his high school band. Music plays an important part in his life and he is determined to play the snare drum in his school’s band. It is this determination, optimism, and the philosophy of living life to the fullest that Sam communicates to everyone.
“Keep Moving Forward”, is a music composition written by Mark Miller for combined concert band, orchestra, and choir. It is written in honor of Sam and represents how Sam lives his life. A few months after Sam passes away, Foxborough High School performs the musical piece. The full musical score and individual instrument sheet music is available to download for free to high school and community band directors.
The goals of the “Keep Moving Forward” websites are to:
• Make available the sheet music
• Increase awareness of Progeria
• Provide educational materials for teachers.
Per the website:
“Mr. Miller was able to truly capture Sam’s spirit and character in the work. In fact, the title of the piece is taken from Sam’s own words and serves as a pillar in his philosophy for a happy life. The tempo of the piece constantly increases, representing Sam’s “moving forward” attitude. The piece is joyful as we sought to represent Sam’s life, not the grief we felt in his passing …”