Picture this: you have a rare condition that takes a huge toll on you and your family. You don’t know how to rid yourself of the disease, but you do know that you will only live up to 14-years-old. This is the difficult reality that children with Progeria must unfortunately face.

Progeria is fatal genetic condition that causes children to have the appearance of accelerated aging. Progeria occurs because of a mutated gene which causes premature aging in children. Signs of progeria become more visible when children turn age 2. Signs include aged-skin, stunted growth, and loss of hair. The symptoms of a child with Progeria increases as they age.

Progeria affects children of all races. Yet the average lifespan of a child with progeria, which is 14, remains the same across the globe. Progeria has no cure. This sad truth is held for every case of progeria.

Sam Berns' story is one that was able to bring some awareness to this disease. His documentary, “Life According to Sam,” was very well-received when it was released in 2013. The 90-minute film shed a light on how Sam lived his life with Progeria and how he put the philosophy, “live life to the fullest,” in action. According to the Progeria Research Foundation, Sam was just like every teenager. He received academic honors and was even an Eagle Scout. All of this goes to show how Sam made the most out of his life.

When Sam was born, his parents recall being distraught over the lack of research and resources on progeria. The information available was outrageously scarce. This prompted them to research on their own in 1999, leading to the establishment of the Progeria Research Foundation. Today, the PRF tracks children with Progeria to estimate its global prevalence and has become a source of information for parents who have children with Progeria.

Despite the fact that the PRF is doing so much work to find a cure for Progeria, awareness about the disease is still very low. Many researchers believe that the more people know about a rare condition, the more likely it will be to find the cure.

Progeria affects lives, and that is a fact. As citizens of the world, it is our duty to bring awareness to this disease to help the lives of children who are affected by this condition.

Learn more here:

https://www.progeriaresearch.org/about-progeria/

https://www.progeriaresearch.org/meet-the-kids/