Jack was a bright, joyful little boy who filled the family home with laughter and light. At 15 months old, he began having seizures and developmental delays, and his family’s world shifted overnight. After months of searching for answers, he was diagnosed, just before his second birthday, with CLN1. This rare and fatal neurodegenerative disease slowly takes away a child’s abilities while leaving their spirit untouched.

We were told there was no cure. No treatment. Only time.

Jack lived 1,000 days, passing away just shy of his third birthday. In those thousand days, he taught us more about courage, gentleness, and unconditional love than most people learn in a lifetime. His resilience, his sweetness, and the way he drew people toward him changed us forever.

Walking through Jack’s illness opened his parents’ eyes to how heavy this journey is for families:
The medical equipment, the travel, the therapies, the lost income, the constant adaptation, and the emotional exhaustion that comes with watching your child face something so unfair. Jack’s family learned firsthand how isolating and overwhelming it can be and how desperately families need support, understanding, and relief.

Jack’s Thousand Days was born of that experience and the truth that his impact didn’t end with his life.

We created this foundation to carry his light forward by helping other families facing life-limiting or lifelong illnesses in their children. No parent should shoulder this alone. No family should have to choose between caring for their child and paying their bills. Through Jack, we learned what love can build when a community comes together — and now we are committed to being that community for others.

Jack’s thousand days changed his family’s lives. Now they’re changing the lives of others, one family at a time.