Luke: Spinal Muscular Atrophy
"Through his treatment at Nemours and the advocacy of his parents, Luke's life looks like that of any other 10 year old."
Luke is an energetic, 10-year-old boy who loves hanging out with friends, swimming and going as fast as he can, whenever he can.
Luke also suffers from spinal muscular atrophy (SMA) — a genetic disorder that begins in the nervous system and affects all the muscles in the body through gradual degeneration.
Luke’s family first joined Nemours when Luke became one of seven children participating in the Spinraza Trials — the first successful treatment option for spinal muscular atrophy which was started by Richard Finkel, MD, while at Nemours Children's.
To this day, Luke’s family travels from their Hickory, N.C., home to the Nemours Florida location to continue treatment with Aledie Amariah Navas Nazario, MD, and Craig Johnson, MD, who have both become a part of Luke’s life in an amazing way.
The hope instilled into the Harris family through their time at Nemours extends beyond their visits and into the everyday moments they all share with Luke.
Through his treatment at Nemours and the advocacy of his parents, Luke’s life looks like that of any other 10 year old. He even has a chair that allows him to stand and sit for better accessibility. Because he loves to swim, his parents contacted Make-A-Wish Foundation, who provided the family with an above ground pool, which was later put in the ground for easier access.
The pool gives Luke the opportunity to enjoy his favorite activity, stay active and also have great therapy sessions at home.
With the support of the Nemours family and the local community, Luke is living a life full of sleepovers with friends, schoolwork and the occasional ATV ride with his dad and sister. The family is very thankful to be supported by the Nemours team as Luke continues to grow as a happy, free-spirited young boy.