At just six months old, Madeline Norton was diagnosed with PKAN, a rare and incurable neurological disease. Her family’s fight to raise awareness and fund research for the condition became the focus of Madeline’s Mission, a campaign that has united Long Island communities around hope, courage, and compassion.
On National First Responders Day, the Norton family joined elected officials, emergency service members, and local residents to honor Madeline’s journey. The event served as a dual tribute—to the young girl whose story has inspired action and to the men and women who risk their lives daily to protect others.
Madeline’s parents, Gerard and Kaitlin Norton, launched the campaign to support life-saving PKAN research and give their daughter, and children like her, the best life possible. Their story has also underscored a broader push in Albany, where legislators are working to establish a Rare Disease Advisory Council to ensure that patients and families have a stronger voice in state health policy.
“Raising awareness and doing what we can to support PKAN research will help save lives,” said Assemblyman John Mikulin. “Public outreach events like these are essential to bringing communities together to improve public health and safety statewide.”
Assemblyman Michael Durso praised the Nortons for “turning heartbreak into action,” while Assemblyman Doug Smith said it was heartwarming to see so many Long Islanders come together to support both first responders and the Norton family. Assemblywoman Jodi Giglio added that first responders “embody the very best of our communities with courage, compassion, and an unwavering commitment to protecting others.”
“Madeline is strong. She is brave. And we will never stop fighting for her,” Kaitlin Norton said.
As First Responders Day reminded New Yorkers to thank those who serve, Madeline’s Mission offered a poignant message of resilience—and the power of love. Visit gofundme.com/f/madelines-mission