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Kason's Big GRIN: Memorial scholarship keeps memory alive

Kason Dedmon was born missing half his brain and diagnosed with a rare genetic disorder called GRIN1—he died in August 2022 at just five years old.

MANSFIELD, Ark. — "GRIN disorder usually is onset at birth, it's genetic. And sometimes it can be just one letter in the 6 billion letters of human DNA that has a spelling error. And as a result, that can have a tremendous impact on someone's life," said Keith McArthur, CureGRIN Foundation CEO.

According to the CureGRIN Foundation, "GRIN disorder is part of a larger family of genetic diseases," with symptoms including:

  • Developmental delay
  • Intellectual disability
  • Autism
  • Speech deficiency
  • Inability to walk
  • Seizures
  • Feeding difficulties

Kason Dedmon was diagnosed with GRIN1 at just two years old. Only a couple hundred babies are born with that variant each year in the United States. According to the foundation, the prevalence of GRIN is approximately 190 per million across GRIN1, GRIN2A, GRIN2B and GRIN2D. The Mansfield boy spent his entire life confined to a wheelchair, unable to walk or speak. But he touched the hearts of everyone he met with his smile.

You'd never guess by the giggles and grins that Kimberlee, Keith Allen, and baby brother Kaine are missing a big piece of their family.

"The day they took Kason, I told you, Keith Allen, that if it wasn't for Kaine that they'd be taking me with him," said Kimberlee Dedmon, Kason's mother.

The Dedmons' lives changed forever in late 2016 when Kimberlee was seven months pregnant with their first son Kason. A 4D ultrasound discovered excess fluid on his brain.

"They told us he wouldn't survive birth. If he did, he would be a complete vegetable," said Keith Allen Dedmon, Kason's father.

After his birth on December 19, 2016, an MRI confirmed Kason was missing half of his brain.

"In my eyes he was perfect," Keith Allen Dedmon said.

Keith Allen had to perform CPR on his infant son at just three months old and that was the first of many scares.

"You'd wake up every single day, and you didn't know anything. Like it's starting all over with a brand new baby every day," Kimberlee Dedmon said.

Kason didn't have any seizures for the first year of his life. But once they started, they didn't stop. The family dealt with these symptoms daily, sometimes multiple times a day.

"The seizures, we knew that he would eventually come out of it, you know, but the respiratory stuff that was to follow was terrifying," Kimberlee Dedmon said.

He would be hospitalized more than 30 times in less than six years and eventually needed in-home nursing to care for his many symptoms, including being unable to walk or speak and using a feeding tube.

"He didn't play by the rules. He surprised you every day," said Stephanie Tyson, RN, one of Kason's in-home nurses.

"If we could make any of his days just a little bit better, then I was in," said Bethina Raybourn, LPN, another in-home nurse for the family.

No matter the struggles, Kason and his family kept on smiling.

"If he can smile every single day, what in the world do I have to be upset about?" asked Raybourn.

"He could turn a frown upside down," said Keith Allen Dedmon.

"He was his own kind of perfect," said Tyson, RN.

"He never failed to grin and look around when he heard our voices," said Lawanda Mounts, Mansfield Elementary Special Ed Teacher.

In August 2022, Kason hit a major milestone — going to school for the first time.

"I really never thought that he would make it to kindergarten. And I know that sounds morbid, but you know, given what we were told, I really wasn't sure if he would make it," said Kimberlee Dedmon.

Mansfield Elementary made special accommodations for Kason, making sure he could be in a regular classroom just like every other student.

"He was part of us. The children accepted him," said Mounts.

That's why the day he died was even more of a shock for everyone in his life. Kason was thriving —he wasn't sick, he'd been in school for a week— but on the morning of August 22, 2022, he didn't wake up.

"The day that I got the call, it was early in the morning and it was really - it was, like, how, how could today be it?” questioned Tyson.

"It was so surreal, that this lively boy that had fought so hard [was gone],” said Raybourn.

"Never in a million years did I ever think that I was gonna come in here and find my son. But I wouldn't bring him back," said Keith Allen Dedmon.

Keith Allen and Kimberlee know Kason is now free, able to walk and talk with no pain.

"Now that he's gone, I know that you really never know the value of a moment until it's a memory," said Kimberlee Dedmon.

Now, they're working to keep that memory alive through a memorial scholarship fittingly named Kason's Big GRIN, to support local high school seniors pursuing a career in medicine.

"Our goal is: If they were to go into medical research, then just some way, somehow, hopefully, they would end up going into finding the cure for GRIN," said Kimberlee Dedmon.

According to the CureGRIN Foundation, that is on the horizon.

"We think that it is curable. You know, we're at this amazing point in research, where I believe that all kinds of different genetic disorders are going to find cures in the next few years. And that's partly because of genetic-based medicines," said McArthur.

While treatment or cure will be too late for the Dedmon family, they still want to help others.

"They wake up and they change the world, every single day," said Raybourn.

And their world is changing, yet again. Shortly after Kason's passing, Kimberlee and Keith Allen found out they are expecting. Zadie Mae Lynn is due in July 2023, just weeks before the anniversary of her big brother's death.

"Whenever we found out she was a girl I knew immediately that Kason had told God to send mom and daddy a baby girl," said Kimberlee Dedmon.

The Dedmons will be able to rock her to sleep in a rocking chair made of the same wood as Kason's casket that now sits in their living room where his crib once sat. A sign on it reads The best seat in the house.

There's no doubt Kaine and Zadie will know who their big brother was, and how he changed lives and raised awareness, all with a grin.

"He could bring you so much joy in such a little encounter. Look deeper, because they give you so much more than you can give them," said Tyson.

"You think your life sucks, but then you look at him and everything that he had to go through. And then he could still smile," said Keith Allen Dedmon.

"He did smile through it," added Kimberlee Dedmon. "It just makes me appreciate God's promise even more, you know? God does promise us eternity, we will see Kason again."

Scholarship applications are due by March 31, 2023, and at this time, it's only open to high school seniors from Mansfield or Waldron. Paper applications can be picked up at the counselor's office at each school. The first recipients will be announced at the end of April, with one boy and one girl each receiving $500.

If you'd like to contribute to the "Kason's Big GRIN Memorial Scholarship," you can donate at any Today's Bank branch in the River Valley or Northwest Arkansas.

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