Baby Madeline Norton was just 6 months old when her parents faced a nightmare no parent should ever know: a diagnosis of PKAN, an extremely rare and relentless disease that slowly robs children of their ability to move, speak and live independently.
Told that Madeline had about 10 years to live, the Massapequa couple’s world had turned upside down overnight.
Since that devastating June day, first-time parents Kaitlin, 29, and Gerard Norton, 32, have shared their daughter’s story with the community, launching a GoFundMe campaign that has raised nearly $57,000 from nearly 800 donors.
Kaitlin also created social media accounts in Madeline’s name — including @madelines.mission on Instagram — to raise awareness and rally support for families affected by PKAN.
Gerard, a first-year officer with the Rockville Centre Police Department, told People magazine about the stunning moment he and his wife received the phone call notifying them that their little girl had a degenerative neurological disorder sometimes referred to as early-childhood Parkinson’s.
“We were coming home from the pediatrician… I just remember thinking I had it all. I’m winning life,” Gerard told People. “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.”
While the couple acknowledge that the initial two days after the diagnosis were a blur, they quickly jumped into action, starting the fundraiser and doing all they could to create awareness of PKAN (Pantothenate Kinase-Associated Neurodegeneration).
The couple, who will be married for two years this December, also discovered they were both PKAN carriers, through genetic testing of their daughter.
Oct. 5 flower bloom and fundraising event
@madelines.mission Putting myself out there is very hard, but if it’ll save my daughter’s life it’s worth it all. Today is day one of me using TikTok to fundraise money to create gene therapy for my daughter’s terminal diagnosis. Madeline was diagnosed with PKAN (Pantothenate kinase-associated neurodegeneration) when she was 6 months old in June of this year. She has a life expectancy of around 10 years and will eventually require a wheelchair and feeding tube. This has been the most devastating thing my husband and I have experienced. I am hoping TikTok will help me raise the $5 million required to fund the gene therapy research. Follow us at Instagram as well @madelines.mission #PKAN #PKANDisease #PKANAwareness #PantothenateKinaseAssociatedNeurodegeneration #RareDisease #RareDiseaseAwareness #NBIA #NBIADisorders #CurePKAN #HopeForPKAN #PKANStrong #EndPKAN #FightPKAN #RareButPrecious #RareBaby #OurPKANWarrior #BraveLittleOne #LittleFighter #TinyButMighty ♬ Live in the Spirit – Josué Novais Piano Worship & Instrumental Worship and Prayer
Building on the massive community support from the summer, Stony Brook University Hospital’s Emergency Department is hosting “Madeline’s Mission” on Oct. 5, 1–5 p.m. at Mastic Ambulance, 1630 Montauk Highway.
The fundraiser aims to help cover anticipated medical costs, support ongoing research and bring the community together for the Nortons.
A highlight of the event will be a DIY bouquet-making activity. Local florists are being asked to donate fresh flowers ahead of the event — either the evening of Oct. 4 or the morning of Oct. 5— so attendees can create bouquets.
Florists and supporters can contact Alison at 631.935.3014 or [email protected] to arrange donations.
Top photos: Main photo of Madeline Norton is courtesy of GoFundMe; the photo in the circular inset frame is from Instagram.
