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Florida toddler diagnosed with a rare and fatal disease

Posted at 8:15 AM, Dec 30, 2019

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 Heintrich’s diagnoses 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,” said Wallace.

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 diagnoses.

“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 why couldn’t have been leukemia that we could cure with a couple rounds of chemo and move on with our lives,” said Wallace.

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,” said Wallace.

The nonprofit Chasin A Dream has 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.

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 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 his miserable and he’s screaming and bleeding everywhere, and it’s those days I’m like, 'Yeah this is real,'” said Wallace.

Poker run held in Stuart for boy battling rare disease

Chasin A Dream and Treasure Coast Harley Davidson held a poker run Sunday at Archies for food, drinks, live music and raffles. Proceeds will benefit the family to help cover medical costs. An anonymous person at the event donated $1,000.

You are asked to use the hashtag #GraysonsFight on social media.

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 early January for more testing and treatment, with chemo expected to start in March.