In November 2024, Grace Ellis and Rhys James from Bridgend, Wales, became parents to a beautiful baby boy named Vinnie. But Vinnie’s arrival came with a rare diagnosis: Goldenhar Syndrome, a condition that affects just one in every 3,000 to 5,000 births.
Goldenhar Syndrome is a congenital disorder that can cause abnormalities in the eyes, ears, and spine. For Vinnie, this means he was born with only one eye and an ear that is not in its usual place. Despite these challenges, Grace and Rhys are filled with love and pride for their son.
The family has been traveling between Wales and London for Vinnie’s medical care, and they’ve been touched by the support they’ve received from their community. “People have been so kind and understanding,” Grace says. “It’s made this journey a little easier.”
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 miracle,” Rhys says. “Every day, he teaches us something new about love and strength.”
The couple hopes their story will inspire others to see the beauty in differences and to celebrate every child’s uniqueness. “Vinnie is perfect just the way he is,” Grace adds. “We’re so proud to be his parents.”
