As 13-year-old Jacy Thomas proudly takes her place on stage waiting for her cue in a Young Actors Theatre production of The Little Princess in downtown Indianapolis, her family is reminded that she really is a star in her own right. Not only does Jacy show her creativity in her love of art and vibrant nature, but in the way she has faced a life-threatening illness. Jacy has courageously undergone new treatments and experimental procedures that have allowed her to grace the stage once more.
Jacy has Myasthenia gravis, a chronic autoimmune neuromuscular condition which is considered a “snowflake disease” since it manifests differently in every individual. If untreated, the condition can be fatal, and treatments have to be as unique as the child. Jacy’s innovative care team at Riley Hospital for Children at IU Health took this challenge to heart. Jacy's mother, Cathy, always felt reassured that her daughter was in the best hands possible.
Her journey started in November 2013, when Jacy suddenly became too weak to move or get herself to school without collapsing. In December, she suffered respiratory failure and was taken to Riley Hospital. When the Riley team finally figured out what was making Jacy so gravely ill, they went to work immediately making their own unique snowflake treatment just for Jacy.
Riley neurologist Dr. Laurence Walsh tried a complex combination of medications, IVIG therapy and steroids. Oncologist Robert Nelson, M.D., consulted with the team about a medication, and Jacy also underwent a surgical procedure called a thymectomy performed by Riley Surgeon-in-Chief Fred Rescorla, M.D. Jacy says she grew close to her nursing team, who helped her family feel secure and “at home” at Riley in a time of great upheaval and stress. Cathy was impressed with the way 12 specialists once gathered in the same room, all devoted to assuring that Jacy get the best outcome possible. “We credit Riley for not ‘settling’ when it came to our child,” says Cathy. “They never acted like Jacy's treatments were good enough; they wanted to keep pushing for better and better results.”
Today, Jacy continues astounding her family with how quickly she has been able to bounce back. “Jacy is so much more like herself now,” says Cathy. She still has some bad days, where school wears her out so much that she must head straight to bed upon getting home. But most of the time she is active (and thankful to be so) as a member of student council, choir and the Linus Club, which makes blankets for shelters and hospitals.
Jacy is especially ecstatic to be healthy enough to participate in theatre, and she credits much of her onstage success to her backstage team at Riley.
Acting is something that very few kids in her school do. It makes her feel unique—kind of like the rare, beautiful “snowflake” that she is.