6 Year-Old Boy Battling Disease So Rare It's Named After Him Continues To Baffle Doctors After 36 Surgeries
Sarah Biren
Sarah Biren
July 2, 2024 ·  4 min read

6 Year-Old Boy Battling Disease Baffles Doctors After 36 Surgeries

Nothing prepared Jenny and Kendyl Kole for the arrival of Grayson. After two healthy kids and normal pregnancies, the unsuspecting parents didn’t think the third child would be any different. However, Grayson is a miracle.

He was born on February 15, 2013, with a vast array of health issues that baffled his doctors. He was born deaf, blind, missing a part of his skull, had swollen eyes, a hole in his heart, a curve in his spine, and severe facial deformations.

The medical personnel had never seen a case like this before and couldn’t place its cause despite the in-depth genetic testing. After further research, they concluded that Grayson was the only person in the world who was born with this form of disease.

They decided to name the condition after him: Grayson’s syndrome.

Grayson’s Birth

In the delivery room, after a normal birth, Jenny and Kendyl waited to hear their baby’s first cry. They heard nothing. Grayson was wheeled away and Jenny began to panic. She saw a glimpse of his thumb and it looked broken. The nurse assured her everything was fine and a few minutes later, Jenny heard his first faint cry. Jenny was able to hold her newborn child for a moment before he was taken for further evaluation.

“The first look at his face, he was my precious gift from G-d,” says Jenny on a Facebook page dedicated to Grayson’s story. “However, I knew something was terribly wrong. His face was severely swollen. His eyes bulgy, and he didn’t look quite normal to me.”

The doctors had no answers for Jenny and she broke down and prayed while her baby fought for his life. She couldn’t understand what went wrong. She attended every prenatal appointment, took every vitamin, and did everything right. 

“As I lay there still numb from the epidural… I prayed again. G-d please help Grayson… Please don’t take my baby from me now.”

The doctors decided to transfer Grayson to a children’s hospital in Atlanta. His parents followed him there, even Jenny who had given birth less than three ago.

Then they were told a list of issues and anomalies their newborn child displayed:

  • Occipital encephalocele
  • Craniosynostosis
  • Micrognathia
  • Thumb hypoplasia
  • Cleft palate
  • Hypospadias
  • Congenital anomalies of the lower limbs
  • ASD of the heart
  • Apnea
  • Blindness
  • Deafness

The doctors said he did not expect him to survive. “His chances are zero.”

The longer the heartbroken parents stayed at the children’s hospital, the more doctors told them the same prognosis.

Grayson was put on a feeding tube since he lacked the ability to swallow and breath on his own. His parents took courses on how to care for their new son, and on February 27, 2013, Grayson was discharged and taken home at last.

Grayson’s Development

“The next five weeks were spent not sleeping, and jumping to his monitor alarms constantly,” remembers Jenny. “Paramedics were called almost daily, sometimes several times a day, when he would quit breathing and we were in a heartbreaking panic to get help to help Grayson. 

“I personally did rescue breaths for Grayson three times when he stopped breathing and did not come around on his own without help.”

When Grayson was five weeks old, Kendyl and the Jenny made the decision to remove his feeding tube and introduce a bottle to him, despite the doctors being adamant the Grayson couldn’t swallow.

The little baby proved them wrong.

“He not only takes a bottle but he has not had the severe apnea spells he did since the feeding tube was removed,” says Jenny. [1]

Grayson Today

Against all odds, Grayson can see perfectly today, albeit with a lazy eye, and only has a minor hearing loss. He continues to gain weight, a huge indicator of improvement.

His parents took him to specialists to give him his best chance at life. A neuro-surgeon did a shunt placement on Grayson and effectively removed a liter of fluid from his brain, saving the child from an eminent seizure and death.

Since then, Grayson has continued to improve and continues to see doctors and surgeons to fix his many medical issues. He has undergone 36 surgeries to date.

Despite all—the doctors’ ill predictions of his future, his parents beginning to plan his funeral, all of his emergency surgeries and treatments—Grayson has grown into a beautiful six-year-old, his mother has described as: “ray of light and is always smiling, no matter how much pain he might be in.”

“Pray for Grayson,” Jenny says. “The good Lord has His plan and we are following his direction for whatever that may be for Grayson without question.”


  1. Grayson’s Story https://www.facebook.com/pg/Graysonkole/about/?ref=page_internal
  2. Mark Baker.