Grayson Heinle, from Jensen Beach, Florida, was born happy and healthy and reached all his developmental milestones in time for the first years of his life.
But he suddenly got worse when he fell on the couch earlier this year and went to sleep and his mother couldn’t wake him up.
The four-year-old has undergone various blood tests at his pediatrician’s office before being referred to an allergist WPTV.
Further tests revealed that he had an abnormal white blood cell count and in October he was diagnosed with a very rare disease called hypereosinophilic syndrome.
The blood disorder affects only 60 people worldwide and causes serious organ damage over time.
In Grayson, his skin and brain are attacked and there is no cure.
Grayson Heinle (left and right), from Jensen Beach, Florida, began to experience symptoms of lethargy at the age of four. After several tests, he was diagnosed with a rare blood disease called hypereosinophilic syndrome
People with HES, such as Grayson (photo), have a very high number of white blood cells that ignite and damage the tissues and organs of the body
“This may sound horrific to most people, but I have often experienced that I said,” I wish it was a known remedy, “Grayson’s mother, Ariel Wallace, told WPTV.
“[I think]: “Why couldn’t it have been leukemia that we could heal with a few rounds of chemo and move on with our lives?”
Hypereosinophilic syndrome (HES) is a group of rare blood disorders that occur when someone has a very high number of eosinophils in their blood.
Eosinophils are white blood cells that help fight diseases – usually parasitic infections, allergic reactions or cancer.
Most people have fewer than 500 of these white blood cells per microliter in their blood, according to the American Academy of Allergy, Asthma and Immunology.
People with HES, however, have three times as many cells – at least 1500 eosinophils per microliter – in their blood for no apparent reason.
Eosinophils travel through the tissues and organs of the body – including the skin, heart, lungs and nervous system – and cause inflammation and damage.
Depending on which part of the body is affected, patients may experience skin rashes, coughs, shortness of breath, fatigue, or memory loss.
Chances of survival have improved over the past 40 years, but HES can be fatal if there is extensive organ damage.
There is no known cure and treatment working to reduce the number of eosinophils in the body to prevent tissue damage, according to the American Academy of Allergy, Asthma and Immunology, but it is not always effective.
The symptoms of Grayson are seizures, skin rashes and painful, bleeding ulcers. He is just one of the 60 known people in the world who suffer from the incurable syndrome. Pictured, left and right: Grayson in the hospital
Grayson and his mother will travel to a hospital in Miami next month for more tests and treatments. Pictured: Grayson (right) and his mother (center) in the hospital
“I often feel like I’m waiting for my son to die, such as which organ is going to fail next, or which system is going to fail,” Wallace told WPTV.
Grayson has recently suffered from seizures, mood swings, skin rashes, and painful bleeding sores.
Wallace said on some days that he seems fine and she thinks doctors might not have made the right diagnosis.
“But sometimes he has skin rashes and he gets sores all over his body for no reason and he cries and feels miserable and he screams and bleeds everywhere,” Wallace said.
“It’s those For days I am like: “Yes, this is real.”
According to WPTV, Grayson and his mother will travel to a Miami hospital next month for further examination and treatment.
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