They Noticed Their Baby Was Stiffer Than Most Newborns. Months Later, She Was Given 10 Years to Live

June began like any other joyful month for Gerard and Kaitlin Norton, proud parents to their 6-month-old daughter, Madeline.

“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 at 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.”

Months earlier, Kaitlin had noticed that Madeline seemed a bit stiffer than most newborns. Out of caution, they consulted their pediatrician, who suggested seeing a neurologist. The neurologist ordered full genetic testing — more as a precaution than a concern.

“We didn’t think anything of it,” Kaitlin recalled. “The last thing on my mind was that something genetically was going to be wrong.”

But on June 12, everything changed. The Nortons received the devastating news that Madeline had been diagnosed with PKAN — an extremely rare neurodegenerative disorder — and that both parents were carriers. Doctors told them their daughter might only have about 10 years to live.

“The next two days were a blur,” Kaitlin said.

They learned that PKAN causes iron to accumulate in the brain over time, leading to severe motor function decline and impairments in speech and swallowing. While there is ongoing research into managing symptoms, there is no known cure.

The couple took a few days off work to process the news but soon shifted into action.

“We knew we had to do something,” Gerard said.

They connected with the Loving Loic Foundation, which is working to raise $5 million to fund gene therapy trials aimed at finding a cure for PKAN. A friend suggested they start a GoFundMe for the foundation — and they wasted no time launching the campaign.

“I was like, ‘Let’s get this plastered everywhere,’” Gerard said. With the help of colleagues, they distributed flyers around town and were amazed as donations began to pour in.

“We started talking to people, and everyone wanted to help immediately,” Gerard said.

Kaitlin also took their mission to social media. On July 24, she posted a TikTok video with a heartfelt plea: “This is day one of using TikTok to save my [daughter’s] life.”

The series, which has since attracted hundreds of thousands of likes, shares updates on Madeline’s condition, details about PKAN, and progress in the search for a cure. Kaitlin also launched an Instagram page, Madeline’s Mission, to further spread awareness.

The overwhelming response has left the Nortons deeply moved. “Every single person just wants to help and everybody wants to get her voice heard,” Gerard said.

“No one wants their kid to go through this. No one wants their kid to be sick. No one wants to watch them struggle,” Kaitlin added. “But the community around us has been amazing.”

Though they know the road ahead will be challenging, the support they’ve received has given them the hope and determination to fight on.

“The first week or two was the hardest — we were definitely super depressed, and we didn’t really know what to do,” Gerard said. “But now I would say we’re pretty positive, we’re determined, and we’re going to beat this.”

Kaitlin agreed: “We are in full force for Madeline’s Mission to fund the cure.”