Rare Love

It was Labor Day weekend 2021 when we found ourselves being whisked to the emergency department by the Boston Children’s team. Our infant son, Jack, was experiencing a 30-minute seizure. Multiple clinicians descended on the scene, quickly connecting him to oxygen, drawing blood and working to stabilize Jack. It’s a moment we’ll never forget. After many days of testing, we were finally told what no parents want to hear—that we were dealing with something significant—and not to Google it.

Jack was diagnosed with Nonketotic Hyperglycinemia (NKH), an incurable, genetic metabolic condition that causes an improper breakdown of glycine, which can lead to developmental delays and seizures. It’s a rare disorder, with only 500 cases worldwide. There was no confidence that Jack would be able to eat, walk, talk, swim or laugh—all things we take for granted. It was like knives to the heart.

That was two and a half years ago. Today, Jack is doing well, and his condition is managed with a ketogenic diet and medication that helps reduce glycine buildup. On a daily basis, there’s a revolving door of amazing specialists who work with Jack for physical, speech, vision and music therapy. We’re so grateful for all the compassionate individuals who help Jack continue to beat the odds—including our Stonehill family.

The friends we made at Stonehill are still our closest confidantes and have been intimately involved in our family’s journey. They have been our rock. When we returned home after a one-month hospitalization with Jack, they were the first to arrive with a care basket. They continually want to learn everything they possibly can about NKH, so they can be the best support—even with their own busy lives and growing families. In 2022, Wendell Cosgrove ’11 along with Sean ’11 and Josie (Unger) ’11 Flanagan organized a fundraiser where more than 50 Stonehill alumni from the classes of 2007 through 2013 came out to support our family and NKH research.

People always comment on how unique Stonehill is and the relationships that are forged here—and not just with classmates, but also with faculty like Professor Michael Mullen. He has been extraordinarily generous in lifting us up when we needed it most. Our Stonehill community has been our light and hope.

As for Jack’s future, the sky’s the limit. While his childhood may look different from a typical one, it’s his childhood, and we know how lucky we are to be experiencing it. He can teach us all a thing or two about resiliency and finding joy in the simple things: lounging in the water, listening to music, going for long walks and napping outside. Jack is our hero and doesn’t let anything stand in his way. We’ll follow his lead and help him reach all the goals he has in mind for himself, with the love and support of our Stonehill family behind us.

Molly (Mattern) ’11 and Joseph ’11 Urban, inspired by their son Jack, are founders of The Jack Richard Urban Foundation to help support Jack and raise awareness of NKH.