When Grace Ellis and Rhys James from Bridgend, Wales, welcomed their son Vinnie in November 2024, they knew their lives would never be the same. But they didn’t expect the rare diagnosis their baby would receive. Vinnie was born with Goldenhar Syndrome, a condition that affects just 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 filled with love and determination 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. “People have been so kind and generous,” Grace says. “It’s been a tough journey, but we’re so grateful for the love we’ve been shown.”
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 hero,” 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’re so proud to be his parents, and we wouldn’t change him for the world.”
