June felt like a dream for new parents Gerard and Kaitlin Norton. Their daughter Madeline had just turned six months old, and life couldn’t have seemed more perfect.
“We were coming home from the pediatrician, I pulled into the driveway, and I just remember thinking I had it all,” Gerard told PEOPLE. “I’m winning life. I’ve got the baby, the wife, the house, the white picket fence, two dogs — I’ve got it all. I’m the luckiest guy in the world.”
But even months before that moment, Kaitlin had sensed something was different. Madeline seemed stiffer than most babies. The pediatrician wasn’t alarmed, but recommended a visit to a neurologist — just to be safe. That led to full genetic testing.
“We didn’t think anything of it,” Kaitlin recalled. “The last thing on my mind was that something genetically was going to be wrong.”
:max_bytes(150000):strip_icc():focal(762x0:764x2):format(webp)/6-month-old-with-rare-diagnosis-080425-3-f59ff868eb8e459ab511dd4e6d56e040.jpg)
Then came the devastating call on June 12: Madeline was diagnosed with PKAN — a rare, progressive neurodegenerative disorder. The couple, both unknowingly carriers of the gene, were told their daughter may only live about 10 years.
“The next two days were a blur,” Kaitlin said.
They soon learned the gravity of the diagnosis. Over time, Madeline would begin to accumulate iron in her brain, which could impact her motor skills, speech, and even her ability to swallow. There’s currently no cure — only limited research focused on managing symptoms.
The Nortons took time off from work, grappling with the reality of the diagnosis. But then, they shifted into action.
:max_bytes(150000):strip_icc():focal(755x0:757x2):format(webp)/6-month-old-with-rare-diagnosis-080425-4-8ab9b06328cc4db597b3250ebe257f14.jpg)
“We knew we had to do something,” Gerard said.
That’s when they came across the Loving Loic Foundation, which is working to raise $5 million for gene therapy trials targeting PKAN. A friend suggested launching a GoFundMe to help. They did — and the momentum built quickly.
“I was like, ‘Let’s get this plastered everywhere,’ ” Gerard said. With help from friends and coworkers, flyers went up around town, and donations began pouring in.
“We started talking to people, and everyone wanted to help immediately,” he added.
Determined to reach more people, Kaitlin turned to social media. On July 24, she posted her first video on TikTok: “This is day one of using TikTok to save my [daughter’s] life.”
Her video series, which has now drawn hundreds of thousands of likes, shares updates on Madeline’s health, details about PKAN, and the broader fight for a cure. Kaitlin also created an Instagram account called “Madeline’s Mission” to expand the reach.
:max_bytes(150000):strip_icc():focal(749x0:751x2):format(webp)/6-month-old-with-rare-diagnosis-080425-1-dbc79b2656ac4521be2eed70ec4dfdb3.jpg)
The response has been overwhelming — and deeply moving.
“It’s restored faith in humanity,” Gerard said. “Every single person just wants to help and everybody wants to get her voice heard.”
“No one wants their kid to go through this,” Kaitlin added. “No one wants their kid to be sick. No one wants to watch them struggle. But the community around us has been amazing.”
Though their journey is just beginning, the support they’ve received has fueled their resolve.
“The first week or two was the hardest — we were definitely super depressed, and we didn’t really know what to do,” Gerard shared. “But now I would say we’re pretty positive, we’re determined, and we’re going to beat this.”
Kaitlin echoed that spirit: “We are in full force for Madeline’s Mission to fund the cure.”
