‘He wasn’t waking up:’ Florida 4-year-old diagnosed with disease seen in only about 60 worldwide
JENSEN BEACH, Fla. — In October, doctors diagnosed 4-year-old Grayson Henley with hypereosinophilic syndrome. Experts say the disease has been diagnosed in only about 60 people worldwide and currently it has no known cure.
Until Henley’s diagnosis, his mother, Ariel Wallace, said he had little to no symptoms.
“He just fell over on the couch to the side and went to sleep, and he slept for three hours like that, and when I went to wake him up, he wasn’t waking up,” said Wallace.
She took him to the doctor, and after several blood tests, he was referred to an allergist. Tests there came back clean, and further lab work revealed abnormal blood counts — later determining his diagnosis.
“This probably sounds really gruesome to most people, but I’ve often found myself saying I just wish it was something that has a known cure,” said Wallace. “Why couldn’t it have been leukemia that we could cure with a couple rounds of chemo and move on with our lives?”
Their new “normal” is filled with anxiety.
“A lot of times, I feel like I’m waiting for my son to die,” said Wallace. “Like, what organ is going to fail next, or what system is going to fail next?”
The nonprofit Chasin A Dream stepped in to help the family as much as the can.
“Because she is struggling with now having to stay home full-time to take care of Grayson,” said founder Lori Griffith.
“And that’s the hard part is waking up every day, and I don’t know, and seeing him like this, I’m like, ‘Oh, he’s fine,'” said Wallace. “Maybe they were wrong. Maybe somebody made a mistake. Maybe someone forgot a test, but then sometimes, he has skin eruptions, and he gets, for no reason, sores all over his body, and he’s crying, and he’s miserable, and he’s screaming, and bleeding everywhere, and it’s those days I’m like, ‘Yeah this is real.'”
Chasin A Dream and Treasure Coast Harley Davidson held a poker run Sunday, Dec. 29 at Archies with food, drinks, live music, and raffles, with proceeds benefiting the family to help cover medical costs. An anonymous person at the event donated $1,000.
Wallace said she refuses to give up hope that a cure can be found. The family plans to head to a hospital in Miami early January for more testing and treatment, with chemo expected to start in March.