NEED TO KNOW
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Gerard and Kaitlin Norton’s 6-month-old daughter Madeline was diagnosed with PKAN, a rare neurodegenerative disorder
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Stunned by the heartbreaking news, the parents tell PEOPLE they launched a GoFundMe to raise money for clinical gene therapy trials — amassing over $30,000 in less than two weeks
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“The community around us has been amazing,” Kaitlin shares with PEOPLE
June was like any other month for blissful new parents, Gerard and Kaitlin Norton, whose daughter Madeline had just reached 6 months.
“We were coming home from the pediatrician, I pulled into the driveway, and I just remember thinking I had it all,” Gerard tells 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.”
Several months earlier, Kaitlin had noticed that their newborn was a bit stiffer than a typical baby, and they brought her into the pediatrician’s office to get her checked out. The pediatrician wasn’t concerned but recommended they see a neurologist, who had the parents conduct full genetic testing out of an abundance of caution.
“We didn’t think anything of it,” remembers Kaitlin. “The last thing on my mind was that something genetically was going to be wrong.”
But on June 12, the new parents received a heartbreaking call: Madeline had been diagnosed with PKAN, an extremely rare neurodegenerative disorder, and they were both carriers. Their daughter likely only had 10 years to live.
Kaitlin Norton
Madeline Norton
“The next two days were a blur,” says Kaitlin.
The parents learned that, within the next few years, their daughter will start to accumulate iron in her brain, which will affect a host of motor functions, including her ability to speak and swallow. And though there is some research into the management of symptoms, there is no known cure.
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At first, the pair laid low — calling off a few days from work to allow themselves to start to process the life-changing diagnosis. But then they sprang into action.
“We knew we had to do something,” says Gerard.
The couple had discovered the Loving Loic Foundation, which is in the process of raising $5 million to fund gene therapy trials in the hopes of discovering a cure to PKAN. One of Gerard’s friends suggested they start a GoFundMe to support the foundation — and so they did.
“I was like, ‘Let’s get this plastered everywhere,’ ” he says. Their colleagues helped them post flyers all around town, and the couple watched in amazement as thousands of dollars started to come in.
Kaitlin Norton
Gerard, Kaitlin and Madeline Norton
“We started talking to people, and everyone wanted to help immediately,” says Gerard.
But the outreach didn’t stop there.
On July 24, Kaitlin uploaded a video to TikTok with a call for help: “This is day one of using TikTok to save my [daughter’s] life.”
In the series, which has now garnered hundreds of thousands of likes on the platform, Kaitlin shares information about her daughter’s health status, information about the disease and updates in the national search for a cure. Kaitlin also launched an Instagram, named “Madeline’s Mission,” to continue to spread the word.
The response, says Gerard, has “restored faith in humanity” for the new parents: “Every single person just wants to help and everybody wants to get her voice heard.”
Lina Lodico Photography
Gerard, Kaitlin and Madeline Norton
“No one wants their kid to go through this. No one wants their kid to be sick. No one wants to watch them struggle,” adds Kaitlin. “But the community around us has been amazing.”
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Though Gerard and Kaitlin know they have a long road forward, the groundswell of support has given them the ounce of hope they’ve needed to forge ahead.
“The first week or two was the hardest — we were definitely super depressed, and we didn’t really know what to do,” says Gerard. “But now I would say we’re pretty positive, we’re determined, and we’re going to beat this.”
Adds Kaitlin: “We are in full force for Madeline’s Mission to fund the cure.”
Read the original article on People
