Loving Loic Foundation

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 Loïc 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 Loïc Foundation, where they will fund vital medical research and help accelerate the path toward clinical trials and, we pray, a cure.

Your support means the world to our family. Whether it’s $5 or $500, every dollar is a step forward in giving Madeline and children like her a fighting chance. If you’re unable to donate at this time, please consider sharing this campaign to help us spread awareness of PKAN.

Madeline is strong. She is brave. And we will never stop fighting for her.

Thank you from the bottom of our hearts for being part of her journey.

P.S. The ultimate goal is to raise $5 million collectively for all PKAN families.

GoFundMe automatically increases the goal as each milestone is reached—let’s keep the momentum going and continue pushing forward!

We are beyond grateful for the overwhelming love and support.

We’ve got this. We love you all ❤️

With love and hope,

Gerard, Kaitlin & Baby Madeline

#MadelinesMission

#PKANAwareness

#LovingLoicFoundation

#TinyButMighty