Five-year-old James Slaney is living with Allan-Herndon-Dudley Syndrome (MCT8), an extremely rare genetic condition that affects brain development and muscle tone. With only a small number of children worldwide diagnosed, James’ journey is truly unique here in Newfoundland and Labrador.
Thanks to the expertise of the Janeway team and the donor-funded resources they rely on, James’ family received the answers they desperately needed. That diagnosis opened the door to a clinical trial in Amsterdam. His medication, brought all the way from the Netherlands, has given him new hope. Today, James is more alert, interactive, and making progress his family once thought impossible.
James’ care is complex, involving many appointments, surgeries, and ongoing therapies both in their hometown and at the Janeway! He recently had surgery on both hips, spending time in the PICU and he relies on a G-tube for nourishment and care. Through it all, the Janeway has been there every step of the way.
James has a special love for Rudolph. His favorite Rudolph teddys have been by his side through every step of his journey, even getting matching casts whenever James does. Just as Rudolph is always there for James, your support is always there for families, making difficult days a little bit brighter.
For James’ family, the Janeway has become a second home and a second family. And for children like James, your generosity truly changes lives.