HENDRICKS COUNTY, In. — A Hendricks County toddler is diagnosed with an “ultra-rare” disease that has been identified in less than 200 people ever in the world.
Rather than focusing on the inevitable future the Kays family is focused on making memories while they can and spreading awareness.
They call themselves “Warriors for Warner.” Warner Kays is 3 years old and has been diagnosed with what experts refer to as an “ultra-rare disease” called INAD.
The diagnosis is bleak. There are no treatments or cures.
Despite the odds, Warner’s story is far from over.
Warner Kays was your average baby hitting milestones, sitting up, crawling, and putting everything within arm’s reach in his mouth.
Until his parents, Paige and Andy Kays, noticed Warner wasn’t hitting the same milestones his older sister, Presley, did, starting around the 12-month mark.
“It was just weird that it seemed to be more exhausting for him versus getting to where he was getting stronger and able to do more endurance-wise,” said Paige Kays, Warner’s Mom.
What started as physical and speech therapy turned into a series of doctor visits and a slew of testing, eventually landing them at Riley’s Hospital For Children.
When Warner was 24 months old, a four-letter diagnosis would shatter the Kays’s world.
Warner was diagnosed with a genetic pediatric neurological disorder, INAD.
“Being that it is neurodegenerative and over time it worsens, unfortunately for these children, their life expectancy on average is no more than ten years,” said Heather Prentice, President of INAD Warriors, an Indianapolis-based non-profit inspired by Warner’s journey.
“We just both were crying, and we were like, no this is not what it is. Let’s get another test,” said Paige.
The Kays went through a stage of denial, wanting a different opinion. They could not accept that something like this could be happening to their baby.
After the diagnosis Warner’s condition quickly declined.
He went from crawling and walking with some assistance to needing to be carried everywhere; he could no longer support his head independently or rollover. He does physical and occupational therapy to help slow the progression of the disease.
Paige has been making video diaries documenting Warner’s journey.
“He was still crawling when we got the diagnosis, so you don’t want to believe it, don’t want to accept it. And then three weeks later, we are not crawling anymore,” said Andy Kays, Warner’s Dad.
His physical ability doesn’t stop him from playing with his sister and parents to the best his body allows. Even though much of his physical ability has declined, Warner’s smile is as big as ever.
He had to get a feeding tube through which he eats a special formula every five hours. This was a decision that was especially difficult for his parents to make because that meant the disease was progressing further.
For a child to have INAD, both parents have to be carriers of the autosomal recessive gene. Even then, there is a 25% chance that a child would express the disease.
“You can imagine how unreal and unusual it would be that the two parents would even find one another, start their family, and sadly have this befall them,” said Prentice.
“We have to do something bigger than just thinking about what is to come. We have to figure out how we can help people in the future,” said Paige.
The Kays are leaning on their faith and living for the moments they can share as a family of four while advocating for INAD research.
They have gone to Disney with Make-A-Wish, frequently get together with friends and family, and have a family vacation to Florida scheduled in October. Warner was even granted the honor of Honorary Captain for an IU men’s basketball game.
They say rather than dreading what is to come, they want to spend their time together soaking in all of the love and joy that they can.
“Go spend that time with your kids and your family because it could be gone like that,” said Andy.
To find a cure or treatment for INAD, the Kays are working with INAD Warriors to raise funds for research.
Their inaugural gala for INAD Warriors is already sold out, but they have a Trunk-Or-Treat and Car Show coming up in Oct, where the proceeds will go towards a grant program to fund INAD research.
