Vinny

Vinny's Story

Our sweet boy, Vinny, is 9 months old. He was diagnosed with Hunter syndrome when he was just a few weeks old and began treatment around 5 months old. Hunter syndrome is a rare genetic condition that affects the body’s ability to break down certain sugars, which can lead to progressive challenges with growth, development, and overall health. Because it is so rare, the early days after his diagnosis were filled with uncertainty. We immediately turned to Google, trying to learn everything we could but information was limited. Finding Project Alive and connecting with other families gave us hope and helped us understand what this diagnosis means for our little boy.

We live in Bakersfield, CA, and every week we travel 2–3 hours each way to UCLA so Vinny can receive enzyme replacement therapy (ERT), the current treatment that helps replace the enzyme his body is missing. Vinny is incredibly brave. Over time, he has learned to tolerate the IVs and pokes like a true warrior.

Despite everything he faces, Vinny is a joyful and resilient baby. He loves to eat, play with his toys, and soak up all the attention from his family. His smiles, laughter, and strong little spirit keep us going. We are so proud of him, and we will continue to fight for the very best future possible for our sweet Vinny.