By: Bailey Chaffin
A truly inspirational and remarkable 17 year old boy, stole the spotlight on Fri., Jan. 10th as his family watched him happily live his last few hours before he passed.
Sam was born with an extremely rare disease called Hutchinson-Gilford Progeria Syndrome or “HGPS”. It is a fatal genetic condition characterized by an appearance of augmented aging in children. Progeria affects approximately one in four to eight million newborns, both genders, and all races. Children are born looking like a normal healthy baby, but symptoms of Progeria start to display at ten to twenty-four months old. The cause of Progeria comes from a gene called LMNA (“lamin-a”). This produces a protein that holds the nucleus of the cell together. In the picture to the right, a normal cell is compared to a progeria cell.
Even though Sam Berns knew he wasn’t going to be able to live as long as most people, he took every second of his life, to live it to the fullest. Both of Sam Berns’ parents were pediatricians, well-placed in the medical center of Boston and were always trying to find answers to their son’s condition. Sam was lucky to live to the age of 17 because the average age to die at is 13 years. God blessed Sam with loving and caring family and friends. Through his years, Sam built entire Lego towns, he earned awards in middle school, played drums in his high school marching band, he went to prom and homecoming, and he dreamed at first of going to Massachusetts Institute of Technology in hopes of becoming an inventor. Then as he grew older he decided he wanted to study Biology and genetics. The symptoms he had were a narrow, wrinkled face, baldness, lack of eyebrows and eyelashes, short stature, small jaw, a thin body, and only weighing about 50lbs.
In an interview with Jon Hamilton on NPR, Jon asks Sam:
“What is the most important thing that people should know about you?”
Sam’s response:
“I have a