Sunday, November 15, 2026
Eight-month-old Madeline Norton is facing a one-in-a-million diagnosis, and her family, and the Rockville Centre community, are determined to fight back.
Earlier this year, Madeline’s parents, Rockville Centre police officer Gerard Norton, 32, and his wife, Kaitlin, 29, learned that she had pantothenate kinase-associated neurodegeneration, or PKAN, an extremely rare, degenerative neurological disorder sometimes called early-childhood Parkinson’s. PKAN causes progressive muscle stiffness, with children often needing a wheelchair and feeding tube in later years. Classic PKAN is typically fatal before age 10; atypical PKAN appears later in life, but is also terminal.
The diagnosis came after Kaitlin Norton noticed Madeline’s stiffness when she was just 2 months old. Many doctor visits and tests confirmed PKAN — a shock to the Nortons, who had tested for genetic disorders before having children. Both parents have since discovered that they are PKAN carriers upon receiving their daughter’s genetic test results.
“We didn’t even know what it was when they first told us, but we never expected to hear that it was going to be this super rare, like one-in-a-million disease,” Gerard said.
The doctors the Nortons consulted had little knowledge of their daughter’s disorder. The family knew there had to be more they could do than simply dwell on the harsh reality, and they decided to take a stand to fight for a cure.
“Me and my wife, we got to the point where we have to do something,” Gerard said. “If nobody’s going to do something, we have to do something.”
They created Madeline’s Mission on July 23, a GoFundMe dedicated to raising awareness and donating all proceeds to the Loving Loic Foundation, an organization based in Bozeman, Montana, that funds medical research and clinical trials with the hope of finding a cure for PKAN. In just under three weeks, they raised nearly $45,000.
The goal is so no family goes through that horrible phone call saying, ‘Your child is going to die,’” Kaitlin said, “but that they get the phone call, ‘Your child does have PKAN, but we’re going to treat it with options.’”
The Nortons live in Massapequa, and Gerard was appointed to the RVC Police Department in April. He felt the love and support from his new community almost immediately. From the Rockville Centre Moms Facebook group to representatives of Molloy University, the couple’s local support has grown considerably.
“The community barely knows me in three months, but they’ve been amazing,” Gerard said. “They literally made me family, and my wife and Madeline. They literally took us in as family.”
The Rockville Centre PBA even donated some of the proceeds of its annual golf outing last month to Madeline’s Mission, and helped spread the word to support the Norton family.
In less than a month, word of Madeline’s battle spread beyond Rockville Centre including Massapequa Historical Society, while others created fundraisers, such as the Centereach and Center Moriches fire departments.
Sherine Blackford created the Loving Loic Foundation, named for her son, Loic, who was diagnosed with the disorder at age 2, in 2023.
“Your child ends up trapped in their body that doesn’t function,” Blackford told the Herald, “and it’s not if they’re going to (lose their ability to move), it’s when.”
Shortly after Loic’s diagnosis, Sherine and her husband, Mark Blackford, partnered with Oregon Health & Science University and UMass Chan Medical School to work with scientists to develop a cure for PKAN. The foundation has raised $1.8 million, but needs to reach $5 million to fund and advance a gene therapy treatment from design to human clinical trials. The Norton family’s GoFundMe is one contributor.
Dr. Susan Hayflick and a team of researchers at OHSU have been studying PKAN since she discovered the gene in 2002. They have petitioned the Food and Drug Administration to approve a food additive that they hope will slow the progression of PKAN, and are also working on gene therapy that could potentially correct the genetic defect that produces it. Treatments can hopefully stop the progression of PKAN, but once a skill is lost it cannot be recovered.
“We couldn’t do it without the families and the nonprofits and their efforts, and they couldn’t do it without us as scientists,” Allison Gregory, associate professor and genetic counselor at OHSU, told the Herald. “So we’re all in this together, and funding always makes research go faster.”
For more information on Madeline Norton or to donate, visit GoFundMe.com/f/madelines-mission-help-fight-rare-childhood-disease-pkan.
