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Florida toddler diagnosed with rare and fatal disease

Only about 60 people worldwide have hypereosinophilic syndrome
Posted at 1:37 PM, Dec 30, 2019
and last updated 2019-12-30 15:37:21-05

JENSEN BEACH, Fla. — In October, doctors diagnosed 4-year-old Grayson Heintrich with hypereosinophilic syndrome. Experts say the disease has been diagnosed in only about 60 people worldwide and currently it has no known cure.

Until Grayson’s diagnosis, his mother, Ariel Wallace, says 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,” Wallace said.

She took him to the doctors 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,' " Wallace said. "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, like what organ is going to fail next, or what system is going to fail next,” Wallace said.

The nonprofit Chasin A Dream has stepped in to help the family as much as they can.

“Because she is struggling with now having to stay home full-time to take care of Grayson,” said founder Lori Griffith.

It’s no doubt an uphill battle with lots of unknowns.

“And that’s the hard part, is waking up every day and I don’t know," Wallace said. "And seeing him like this, I’m like, 'oh he’s fine, 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.' "

Poker run held in Stuart for boy battling rare disease

Chasin A Dream and Treasure Coast Harley Davidson held a poker run Sunday, December 29. Proceeds will benefit the family to help cover medical costs. An anonymous person at the event donated $1,000.

Grayson’s mom says she refuses to give up hope that a cure can be found. The family plans to head to a hospital in Miami in early January for more testing and treatment with chemo expected to start in March.

This story was originally published by Jillian Idle on WPTV.