Grayson H.

Almost 2 months ago Ariel noticed something was wrong with her 4 year old son, Grayson when she went to wake him up one Saturday afternoon and he was difficult to arouse. Since then she has been in the fight of her life for her sons health and it’s far from over.

A CBC done by his primary care physician revealed severe abnormalities. The time between that Saturday and now she has had to take Grayson to specialists all over the state of Florida and been in and out of ERs, Nemours children’s hospital and the Cleveland Clinic searching for answers as Grayson’s symptoms worsened. 

Grayson has had every test possible repeated multiple times in an attempt to find another reason. Their week at Nemours ended with a 3 day eeg, sedated MRI and bone marrow biopsy and aspiration that revealed that the disease has now spread to his central nervous system, skin and lower airway. 

When everything else was ruled out the only option left on the table is HES: Hypereosinophilic Syndrome, an extremely rare blood disease. There is no known cure.

HES requires a full 6 months of the disease before confirmation and treatment can begin because of how rare it is. She’s two months in and has 4 more to go. 

Graysons current secondary diagnosis’:

Severe Hypereosinophilia 

Anisopoikilocytosis

Syncopal episodes

leukoerythroblastic reactions

Seizures

Lower airway disease

Skin eruption

Normocytic anemia 

leukocytosis

The time between now and March will be filled with more doctors and hospitals as they hopefully travel back to Nemours this coming week. 2 months ago she had what she thought was a perfectly healthy baby boy. Life could have never prepared her for what has occurred and what is still to come. HES is a disease that causes multi system and multi organ failure. It is a fatal disease.

Here is more of this Little Warrior’s Story

February 29, 2020

Please join us in raising awareness for the 5% of people worldwide fighting rare diseases that have no cure. 

This movement and day is trying to catch the attention of medical professionals, researchers and professionals to make a difference. To invest in knowledge and expansion of medical practices, equipment and care. 

To catch the attention and spark an interest in someone with the ability to help.

6 months ago I could have never ever thought he would be the one. I was terrified to deal with snotty noses and boo boos. I never could have been prepared for the journey we were about to embark on.

I still remember the day that the doctors realized something was seriously wrong with my baby. I cried my eyes out in a cold doctors office wondering how the hell this could happen to a child. While they frantically made phone calls I waited and just held my boy. I was confused, lost and ran on pure adrenaline for weeks while they tried to narrow down exactly what it was. 

As exhausted as we are, our fight has only just begun. Like many others.

I have to wake up every day and go to bed every night knowing there is nothing within our human capability to save my son at this time.

That there not only is a short timeline on the days I have with him but because of the unknown- I have no idea how long. Could be 2 days, 2 months or 2 years.

There has to be someone out there with the ability to help those like my son, Gray.

August 21, 2020

Gray is going to be admitted for a few days at Nemours. (Waiting on insurance authorization and this hurricane coming).

He is having frequent seizures/syncopal episodes and she believes possible neuropathy. He didn’t respond well to her tests today.

The tests will be to try to figure out why he’s losing nerve response in his legs. She’s assuming it’s due to having increased eosinophils because of his HES for an extended period of time. It may have caused blood flow issues to his legs.

He’s on stroke watch with no strenuous activity until he can get admitted for more in-depth testing.

He’s also waiting for a bone marrow biopsy at the University of Miami but we’ll have to see what this hurricane does. We’re scheduled to be at Miami Tuesday.

Another appointment tomorrow morning with the Cleveland clinic.