Sammy

Sammy loved to make friends and it didn't matter who you were! He never met a stranger! I swear his smile was permanently painted on his face. He had this huge joy even during difficult times. His favorite thing in life was being part of a team. Whether it was football, basketball or Boys scouts you could rest assured he would participate with a passion that was unmatched! He was the definition of joy. I want to tell Sammy's story but I want to start at the end somewhat. Sammy finished his journey with TANGO2 disease on October 23, 2018. However, I want to tell you not what the disease did to him but what he did living with TANGO2 disease. From the moment Sammy took his first steps he would stumble and fall. But he would also always get up and try again over and over again. Honestly, this is the story of his life; falling and getting back up! When he was told he couldn't play football because his doctor couldn't clear him to play a contact sport, he cried and was upset! But he quickly found that smile and became the next best thing, he became the "water-boy" as he would refer to himself in Junior High and later the football manager in High School. He became the best player on the team without setting a foot on the field. Sammy was also involved in Boy Scouts of America. He started as a Tiger Cub at the age 5 and completed the program at the age of 17 as an Eagle Scout. The highest rank he could achieve as a Boy Scout! Was it easy? No, it was definitely not but he didn’t give up! His dad was with him every step of the way and he had the most supportive leaders. When it came time to start college he got involved with the basketball team as their manager, a position that wasn’t even available, but Sammy won over the head coach. He was only with them for a month and a half at the time of his death, but you wouldn’t know it by the love his new teammates had for him! He did all this throughout his life undergoing numerous test and hospitalizations as TANGO2 disease had not been discovered. He was the patient that inspired the discovery of the disease. Sammy never let TANGO2 disease define him! He always found a way to live life to its fullest and we, as his parents, allowed him to try anything he put his mind to! We have no regrets and only an unending gratitude that we were allowed to be his parents and that he is being used to one day find a cure for all of his TANGO2 disease brothers and sisters! Sammy’s TANGO2 disease journey started on June 9, 2000 but it didn’t end with his passing! He continues to be an inspiration to our TANGO2 community, his friends and especially his family! #livelikesammy