Alex and his twin brother, Niko, were born after eight unsuccessful rounds of IVF. Before starting our IVF journey in 2016, we did everything we were supposed to do. Our IVF doctor recommended comprehensive genetic testing, and we both completed carrier screening through Recombine.

What we didn’t know was how little we knew about rare diseases, and that a “comprehensive” genetic panel was not truly comprehensive. We thought we had asked the right questions, followed the right advice, and done everything within our control.

Alex was born on September 19, 2019. He crawled first, walked first, and spoke first. We never even had to potty train him; one day, he simply decided to start using the potty. By three, he was putting together puzzles meant for much older children. He loved painting and drawing, and he still loves creating and building things today.

He is tall, handsome, brave, and one of the kindest boys you will meet. He hikes, skis, swims, does well in school, and loves helping around the house. Even as his vision has declined, he somehow still reads the room. He notices how people are feeling and what they need, often before they ask. He brings his grandma her glasses, gets a blanket when one of us is cold, or gives a hug when he senses we need one. He is sweet, thoughtful, creative, and deeply caring, and we are so lucky to be his parents.

Unfortunately, our story is not unique. Alex failed his vision screening at his five-year check-up. It took eight months and a lot of persistence to finally understand why he was struggling to see and why no pair of glasses was ever going to solve the problem.

On February 5, 2026, our hearts were shattered. We learned that the reason Alex was losing his vision was CLN3 Batten disease. Hearing that your child will become blind, develop dementia, and die in his twenties is something no parent can ever prepare for. There are simply no words to describe that kind of pain.

CLN3 is a relentlessly progressive disease. Every month that passes without treatment means more neurons lost, more vision gone, and more of our child slipping away. Time is the one thing these children do not have, and it is the one thing that no family can ever buy back.

Parents of children with rare diseases do not have the luxury of waiting. We fight because we must, because our children cannot fight for themselves, and because hope, however difficult the road, remains the only acceptable option. There is a saying that hope is a verb with its sleeves rolled up. Ours are rolled up as high as they can go.

Help give Alex and other children with CLN3 the chance to keep their memories, their independence, and their future, and give their parents what every parent should have: the chance to watch their child grow up instead of watching CLN3 slowly take them away.

Please join our fight!