The Ethos of Ethan – Our Champion Child!
Welcome welcome to our 2023 Champion Child, Ethan James!
Ethan James, age 10, of Coventry, RI, receives ongoing care at Hasbro Children’s Hospital for sickle cell disease, a genetic blood disorder that affects red blood cells. To the devastation of his parents, Sachoy and Clayton, Ethan was diagnosed with the disease a week after he was born. “There was a lot of crying because we weren’t sure how we were going to deal with this – he was our only child and I didn’t know of any family members who had it,” Sachoy says.
The staff at Hasbro Children’s Hospital first began treating Ethan when he was an infant, initially with an antibiotic as a preventative measure against severe infections. In the first years of his life, Ethan often visited the emergency department for monitoring whenever he had a significant fever, as a high temperature or infection can be dangerous for a child with sickle cell disease. One time, in 2014, Ethan spent five nights in the hospital for a fever “that would just not go away,” as Sachoy describes it. “It was the longest nights of our then-almost-two-year-old’s life,” she says. Today, with medication management and regular visits to Hasbro Children’s hematology/oncology clinic, also known as the Tomorrow Fund Clinic, Ethan is enjoying a full and vibrant childhood.
His daily life is moderately affected by sickle cell disease. In addition to trips to the hospital, he must remember to stay well hydrated and not let his body temperature fluctuate too much. For example, he needs to be sure to wear a jacket when it starts to get cold out and avoid staying outside in the sun for a long time on a hot day. “If he gets too hot or too cold, it can trigger a crisis,” Sachoy says. Ethan loves painting, playing videogames, and watching Marvel movies. “I feel like a normal kid,” he says.
“We’re extremely thankful that due to his care, Ethan is experiencing one of the best-case scenarios for a child with sickle cell disease.”
Sachoy, mother of Ethan