For the first year of his life, Warner Kays looked like an average, healthy, happy baby. He crawled around, took joy in family time with his older sister Presley, and was hitting his regular milestones. However, reports Sierra Hignite of Fox 59, his parents Paige and Andy realized that his milestones began slowing down around the one-year mark. Warner wasn’t hitting the same milestones as Presley—and the family was slightly concerned. Why did their young child suddenly seem more fatigued or even developmentally regressive? Physical therapy. Speech therapy. Test after test. And after another year, when Warner was two years old, the family received the final diagnosis: infantile neuroaxonal dystrophy (INAD). Less than 200 people in the world have been diagnosed with INAD.
At the time of diagnosis, the Kays family could not believe it. How could their son have this ultra-rare disease? What did that mean for his future? When they looked at Warner, who was still crawling at the time, they could not imagine what this would bring. And just three weeks after his initial diagnosis, he lost the ability to crawl.
Now his family, self-deemed as “Warriors for Warner,” is doing all that they can to raise awareness and funds to advance research into INAD. More importantly, they are spending all of the time possible with Warner, who is now three years old. Warner now requires mobility assistance, as well as assistance with feeding and supporting his head. But he has remained upbeat and positive, his beautiful smile emerging through every Disney trip and time as Honorary Captain of the IU Men’s Basketball Team.
INAD Warriors is also working to raise funds and awareness to support Warner and work towards finding a potential cure. If you’d like to join this mission, you may donate to INAD Warriors.
About Infantile Neuroaxonal Dystrophy (INAD)
PLA2G6-associated neurodegeneration (PLAN) is an ultra-rare inherited neurodegenerative disorder characterized by nerve ending abnormalities in the brain, spinal cord, and peripheral nerves. There are three subtypes of PLAN: infantile neuroaxonal dystrophy (INAD), atypical neuroaxonal dystrophy (aNAD), and PLA2G6-related dystonia-parkinsonism.
INAD is a neurological disorder that affects the axons, which carry messages from the brain to other areas of the body. It is inherited in an autosomal recessive pattern, which means the affected individual must inherit one defective gene from each parent. The gene mutations cause phospholipids to build up in the axons, damaging them and causing symptoms.
Symptoms of INAD often appear between 6 months and two years of age. They worsen (progress) over time. Symptoms may include:
- Delayed or difficult walking
- Note: Children often lose the ability to walk, crawl, or sit independently over time.
- Loss of head control
- Distinct facial features such as a prominent forehead, large and low ears, and a small nose and jaw
- Vision deterioration
- Crossed eyes
- Choking and nasal regurgitation
- Nystagmus (involuntary eye movements)
- Overactive reflexes that are later lost
- Difficulty swallowing
- Poor articulation or slurred speech
- Hypotonia (low muscle tone) in the trunk
- Loss of speech
There is no cure for INAD. Specialists may be leveraged to manage symptoms.