Skip links

Rare Disease Day: In Loving Memory of Tommy

On Rare Disease Day, we are dedicating this blog to Tommy, a selfless and caring individual we had the opportunity to serve for several years. In 2003, Tommy was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder where the body does not maintain muscle mass due to an inborn lack of the protein dystrophin. The X-linked condition affects boys, significantly shortening their lifespans by weakening the muscles of the heart and lungs, leading to the potential for cardiac or respiratory failure. Unfortunately, in December 2022, Tommy lost his courageous fight with DMD.

Despite Tommy’s many challenges with DMD, he always had a positive outlook, no matter what he was faced with. “He never complained,” said TJ, Tommy’s father. “He never said this isn’t fair or why me. We learned to do so many things and overcame them. We stuck together through the hard times and enjoyed the good ones.” Tommy was profoundly grateful that TJ, and Tommy’s sisters, Chayanne, his fraternal twin, and Melanie, were always by his side, patiently assisting him and caring for him every step of the way.

Tommy was an advocate for helping those affected by DMD. Tommy fundraised for many years on the annual Fill the Boot Drive, a partnership between the Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) to raise awareness and funds in the fight against DMD and other forms of muscular dystrophy.

One of Tommy’s favorite activities was bowling, which he and his fraternal twin sister, Chayanne, started in the ninth grade. He made the high school varsity bowling team in his final year of high school. Tommy was also a strong writer and wrote a poem encompassing his thoughts and feelings living with DMD, the importance of his support system, and his continual goal for a fulfilling life.

1146002_Orsini Tommy-s Poem_090121

Tommy will always hold a special place in our hearts. We are grateful for the privilege of serving Tommy throughout his journey with DMD. His optimism, strength, and courage motivate us every day in our mission to provide hope to people living with a rare condition along their journey and to ensure that No Patient is Left Behind™.