When Grace Ellis and Rhys James from Bridgend, Wales, welcomed their son Vinnie in November 2024, they knew their lives would change forever. What they didn’t expect was the rare diagnosis their baby would receive. Vinnie was born with Goldenhar Syndrome, a condition so rare that it affects only one in every 3,000 to 5,000 births.
Goldenhar Syndrome is a congenital disorder that impacts the development of the eyes, ears, and spine. In Vinnie’s case, it means he has only one eye and an ear that is not in its usual place. Despite these challenges, Grace and Rhys are determined to give their son the best life possible.
The family has been traveling between Wales and London for Vinnie’s medical appointments, and they’ve been overwhelmed by the support they’ve received along the way. “People have been so kind,” Grace says. “It’s been a tough journey, but we’re not alone.”
Grace and Rhys have been sharing their story to raise awareness about Goldenhar Syndrome and to show the world that Vinnie is just as special as any other child. “He’s our little warrior,” Rhys says. “Every day, he shows us how strong and resilient he is.”
The couple hopes their story will inspire others to embrace differences and celebrate the uniqueness of every child. “Vinnie is perfect in his own way,” Grace adds. “We wouldn’t change him for the world.”
