Liam

Liam's Story

Before Liam was born, an ultrasound showed that his head was measuring larger than expected. A fetal MRI was normal, and on September 14, 2021, Liam was born weighing 11 pounds. 11 pounds of pure love.

But Mom always felt something wasn’t quite right. As Liam grew, his speech was delayed and he reached milestones later than expected. When he was two, our new pediatrician listened to our concerns and ordered a sonogram, which revealed an enlarged liver and spleen.

What followed was months of testing, specialists, waiting, and uncertainty. It was an emotionally brutal time for our family. In January 2024, we finally received the diagnosis, Hunter syndrome, also known as MPS II.

Liam began treatment through a clinical trial in New Jersey in May 2024, and we have traveled there from Long Island every week since. His treatment is not a cure. Hunter syndrome is still progressive, and his future remains unknown. But it has given us hope, time, and the opportunity to keep fighting for more.

Before Liam began treatment, he was saying little more than “Mama” and “Dada.” Today, he speaks in sentences, rides his bike, and attends kindergarten with therapies and extra supports. We are incredibly grateful for the abilities he has today and for every milestone we get to celebrate along the way.

But Liam is so much more than his diagnosis. He has a silliness and wit that can make anyone laugh. He greets his nurses with a completely serious, “Hello, young lady,” he thanks people for the smallest things, and loves yelling across the street to our neighbors coming home from work, “Hi! What do you want for dinner?”

He loves Hot Wheels, kinetic sand, snacking on his favorite chips, and making people laugh. Human connection is his love language, he loves having his family together. He has a way of making everyone around him feel his love. This is the little boy we are fighting for and this is the boy we never want to lose. 

We know treatment today is not a fix. We know there’s more work to be done, more options, and ultimately, a cure. We hope you’ll help support Project Alive, so that Liam and every child living with Hunter syndrome can have the future they deserve. Project Alive is the reason the impossible feels possible. They fuel our resilience tank when the road ahead feels overwhelming and give us the strength to keep fighting. And through it all, Liam is the boy who is teaching us to keep smiling, even on our worst day.