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Owen Scott Carnes was born on April 21, 2026 to Brandon and Melissa Carnes. After a routine discharge, he went home to meet his big brothers, Bobby and Hunter. The family could not have been happier. Unfortunately, this bliss was short-lived.
Within days of moving into his new home, Owen displayed seizure activity and quickly turned blue. He was rushed to the hospital for immediate care. After arrival, he stopped breathing. It happened again...and again...and again. Despite being stabilized, it was clear to the medical team that his condition was serious and complex. He was transferred to the Neonatal Intensive Care Unit (NICU) at Children's Hospital in Detroit. Seizures and apnea episodes increased in frequency and severity. Seizure cluster episodes would produce upwards of 10 seizures in an hour. Apnea episodes would come without warning, resulting in multiple incidents per day where he would stop breathing and require intervention, including intubation. Testing of brain wave activity, heart rhythms, and every reasonable medical conclusion to explain the nature of his symptoms and provide a diagnosis proved unsuccessful. His loving parents could not leave the room for more than moments without risking an unsupervised episode, even with the presence of medical staff.
One month after his birth, Owen's parents were informed that a diagnosis had been reached after genetic testing results had returned. Owen was diagnosed with an ultra rare genetic mutation called KCNT1 epileptic encephalopathy. The seizures caused by this genetic mutation are resistant to medication. This causes significant neurological, muscular, social, and intellectual impairment. It also significantly shortens life expectancy given the lack of established treatment options, with most children diagnosed not living past 3. Less than 3,000 cases exist worldwide, which makes the condition extremely difficult to study.
The news has been heart-shattering for Owen's family. Two parents that would move heaven and earth to support their child continue to fight for options as they spend each day and night in the NICU, never stopping to remind their son how perfect and loved he is.
The truth of Owen's condition is that the outlook is bleak. There is no guarantee that he will leave the NICU and play with his brothers again. There is no guarantee that experimental treatment options will emerge and be successful. The only guarantees at this point are that his parents will not stop fighting for him and that he is loved so very much.
My name is Phillip Hunter. I am proud to be Owen's uncle, Melissa's brother, and Brandon's brother-in-law. Melissa and Brandon are the best people I've ever known. Melissa was my first friend and remains my biggest support to this day. Brandon was my best friend for all of high school, and I could not be luckier to have him as a brother; and he truly loves Owen's brothers as if they were his own. The thing about them is that they don't ask the world for anything, because they have each other. They laugh harder than any couple I've been around. They still get starry eyed every time they're in the same room despite years together. I've truly never seen my sister happier than I have throughout their marriage and pregnancy. It is my profound joy to be witness to the life and family they've created together.
I ask that you consider offering financial support to Owen and his parents' fight with KCNT1 epileptic encephalopathy. The medical bills continue to pile every hour. If he is to ever return home, he will need significant medical care and equipment, including surgery. This may also require one or both parents to reduce or leave their employment in order to provide him with round-the-clock care. We want this beautiful boy to have every chance at a happy, healthy life. Your thoughts, prayers, and financial contributions will make every difference in that goal.
For more about KCNT1 epileptic encephalopathy, please see the following links:
Organizer and beneficiary
Melissa Carnes
Beneficiary