Madeline Norton

At just 6 months old, our beautiful daughter Madeline was diagnosed with a heartbreaking and incredibly rare genetic condition known as PKAN (Pantothenate Kinase-Associated Neurodegeneration). PKAN is a neurodegenerative disease that slowly robs children of their motor functions, speech, and eventually their ability to walk, eat, and live independently. There is no cure.

Madeline was born full of life, light, and an infectious smile that could brighten even the darkest of days. As first time parents, my wife and I never imagined that just months into her life, we would be faced with such devastating news. We noticed subtle signs unexpected stiffness, but never expected they would lead to this diagnosis.

PKAN affects fewer than 1 in 1 million children. Because of its rarity, research is limited and funding is scarce. But there is hope; hope that comes from organizations like the Loving Loic Foundation, which is leading the charge in research, advocacy, and support for families like ours.

We are launching Madeline’s Mission not only to raise awareness of this cruel disease but also to rally support in honor of our daughter’s fight. All donations will go directly to the Loving Loic Foundation, where they will fund vital medical research and help accelerate the path toward clinical trials and, we pray, a cure.