Skyler and Oliver (Ollie) Chu are brothers from California living with Hunter syndrome (MPS II), a rare genetic condition that affects roughly 1 in 100,000 boys. This is their story, and how you can help find a cure before more kids run out of time.
Meet the boys
6 years old
Big brother. Curious, caring, and always the first to grab your hand on a walk. Skyler was diagnosed with Hunter syndrome as a toddler, and he's been facing it with the same big heart ever since.
3 years old
Little brother and world-first pioneer. In February 2025, Ollie became the first person in the world to receive a groundbreaking gene therapy for Hunter syndrome, and he's thriving.
Our bodies have tiny cleaners that scrub sugars out of our cells. Skyler and Ollie were born without one of those cleaners, called IDS.
Without the cleaner, sugars slowly build up, like toys that never get put away. Over time, that pile-up hurts the brain, heart, joints, and more.
Hunter syndrome (also called MPS II) is very rare. Picture a huge football stadium packed with 100,000 people. Only one seat in the whole stadium belongs to a boy with Hunter syndrome. Kids look healthy at first, then symptoms show up around age two.
It's super rare. Fewer patients means less funding and fewer researchers working on it.
The brain is a fortress. A protective wall (the blood-brain barrier) keeps most medicines out.
Damage can't be undone. Treatment has to happen early, before the sugars cause harm.
Existing medicine is limited. The main drug costs over $300,000 a year and still can't reach the brain.
Even a promising treatment has to be tested carefully, first in just a few children, before doctors can be sure it's safe enough to offer more widely. That caution is what protects kids, but it also takes years, and for a fast-moving condition like Hunter syndrome, years are exactly what families are racing against.
The good news: In 2025, Ollie became the first child in the world to receive a new gene therapy that can cross into the brain. A year later, his doctors say he's developing normally. The dream is for Skyler, and every child like him, to get the same chance.
In the news
BBC News · November 2025
The BBC followed Ollie's story for more than a year, from the day his stem cells were harvested in Manchester to the moment he became the first child in the world to receive the gene therapy infusion. His progress has stunned doctors.
Read the BBC story →Upcoming event
Join the Chu family and the community for a morning of sports, family fun, and fundraising to support research into Hunter syndrome (MPS II).
Why come?
How you can help
Project Alive funds cutting-edge research to find a cure for Hunter syndrome. Every dollar goes further than you'd think.
Visit Project Alive →Join us July 19 in Chino, CA for sports, family fun, and community. Bring the kids, and bring friends.
Register now →Awareness is the first step to research funding. Share Skyler & Ollie's story on your socials and with your family.
Read the BBC story →Get in touch
Questions, kind words, or ways you'd like to help? We'd love to hear from you.