Little Vinnie James was born with only one eye and an ear positioned differently than usual, and was later diagnosed with Goldenhar Syndrome. Now he makes regular visits to Great Ormond Street Hospital.

The family of a remarkable baby born with a rare facial condition have thanked medical staff as they raise funds for life-changing treatment.

Grace Ellis, and Rhys James, from Bridgend were overjoyed as they awaited their baby’s arrival, but their excitement quickly turned to concern when Grace went into labour at Glangwili Hospital on November 9. Their newborn, Vinnie James, entered the world with a rare condition that surprised everyone.

Baby Vinnie was born without one eye and with one ear positioned differently. Grace revealed: “It was a complete 𝗌𝗁𝗈𝖼𝗄 to us. Obviously, when he was born, my mum noticed that his ear was in the wrong place. They had to help him breathe because he wasn’t breathing on his own, and then they took him over to the NICU. A few specialist doctors came to examine him.”

She added, “I think it was only about two or three hours after he was born. They said to us he hadn’t developed one eye, the ear difference was obvious to us, and then they noticed he had a smaller jaw.”

It wasn’t until specialists at Noah’s Ark Hospital in Cardiff examined the little one that they confirmed Vinnie had Goldenhar Syndrome, an exceptionally rare condition. Grace explained, “It affects only around one in 6,000 people. A majority of them are boys. So it’s quite rare, and there’s no known reason for it. Vinnie is also one of only two children in the world reported to have Goldenhar syndrome without an eye, which is extremely unusual for this condition.”

At just three months old, Vinnie had already undergone a constant stream of medical procedures and scans. In addition to his diagnosis, doctors also discovered he had sleep apnoea, which led to a tracheostomy, meaning he breathes through a tube in his neck, and he is fed through a nasogastric tube.

Grace admitted that watching her young son go through so much has been incredibly difficult as a mother.

She said: “It is hard. At first, it was overwhelming because you go through the stages of wondering, ‘Why has this happened to my child?’ I’ve got a daughter who’s six, and she’s never had any health problems. So it was a huge 𝗌𝗁𝗈𝖼𝗄.

“But honestly, we’ve had so much support from the staff in Cardiff at Noah’s Ark. Our church family has also been incredibly supportive. We couldn’t have done this without them.”

Grace added: “He’s amazing. He’s got such an attitude already. He’s such a strong-willed baby. Since he was born, he’s constantly been having procedures, blood tests, scans, and seeing all these different departments. Through it all, he’s been incredibly strong. He’s amazing.”

Little Vinnie now makes regular visits to Great Ormond Street Hospital in London for prosthetic eye fittings, a lengthy process that requires frequent appointments before he can receive a permanent prosthetic.

Grace explained: “Because Vinnie doesn’t have one eye, they need to begin the process while he’s still very young.

“There’s an amazing ophthalmology specialist at Great Ormond Street Hospital. She fitted Vinnie with a small prosthetic yesterday, and now we have to return every two weeks so she can gradually increase its size until the socket matches the other side and he can receive a permanent prosthetic.”

However, these regular trips have placed extra pressure on the family’s finances.

Grace said: “We only found out the day before our appointment that we needed to travel there, so everything happened at very short notice. Nick, a close family friend, kindly started a fundraiser for us.”

Meanwhile, Vinnie’s older sister, Mayah Udraufski, 6, has been doing everything she can to help care for her little brother.

Grace shared: “It was very difficult for her while we were in hospital. Vinnie stayed there for 65 days, and she’s my little sidekick, so it was hard for her to understand why I couldn’t always be with her.

“But since he’s come home, she’s been absolutely amazing. She helps with Vinnie’s daily care whenever she can and understands everything he needs. She says she wants to become a nurse when she’s older. It’s made her much more aware of disabilities and different medical needs at such a young age.”

Although the journey has been challenging for the family, Grace said their faith has helped them stay strong.

She said: “It has affected my mental wellbeing at times. Before Rhys and I started going to church, we were completely different people. But having our faith and so many people supporting us has helped us through everything.”