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

Grace Ellis, 25, and Rhys James, 26, from Bridgend were over the moon as they awaited their baby’s arrival, but their joy turned to fear when Grace went into labour at Glangwilli Hospital on November 9, 2024. Their newborn, Vinnie James, came into the world with a rare affliction that worried everyone.

Baby Vinnie was born missing an eye and with his ear misplaced. 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 resuscitate him because he wasn’t breathing and then they took him over to the NICU, and then, a few of the specialist doctors came and had to look at him.”

She added, “I think it was only about two or three hours after he was born. They said to us, he hasn’t got an eye on the one side, the ear was obvious to us and then he had a smaller jaw.”

It wasn’t until experts at Noah’s Ark Hospital in Cardiff examined the little one that they could determine Vinnie had Goldenhar Syndrome – an exceptionally rare condition. Mother Grace explained, “It affects only like one out of 600 people. A majority of them are boys. So it’s quite rare to have, there’s no actual reason for it at all. And Vinnie’s only one out of two in the whole world that was born with Goldenhar syndrome without the eye, it’s not normal to not have an eye with the condition.”

At just three months old, Vinnie has endured a constant stream of medical procedures and scans since birth. In addition to his initial diagnosis, he was also found to have sleep apnoea, which led to a tracheostomy – requiring him to breathe through a tube in his neck – and is fed via a nasogastric tube, reports Wales Online.

Grace confessed that watching her young son face such challenges was difficult as a mother. She said: “Well, it is hard. At first, it was quite daunting because you go through the stages of, ‘Why has this happened to my child’, kind of thing. I’ve got a daughter, who’s six, and she hasn’t got any problems with her at all. So it was a big shock. But to be honest, we’ve had so much support from staff, in Cardiff, in the Noah’s Ark. Our church family has been so supportive around us, we wouldn’t have been able to do it without their support.”

Grace said: “He’s amazing. He’s got such an attitude already. He’s such a strong-willed baby. Since he’s been born, he’s constantly just been having, procedures, blood scans, and being passed around all these different departments. And he’s been so strong, but he’s been having it all. He’s amazing.”

Little Vinnie must make regular visits to Great Ormond Street Hospital in London for a prosthetic eye fitting, a demanding process that requires numerous hospital trips before receiving a permanent prosthetic. Grace shared: “Basically, because Vinnie hasn’t got an eye and they have to start the procedure when he’s young.

“So, there’s an amazing doctor, she’s a specialist in ophthalmology at Great Ormond Street Hospital. She’s basically just put a small prosthetic eye into Vinnie’s eye yesterday and we’ve got to go back every two weeks for her to enlarge it until she can get the gap the same size as the right so she can put a permanent prosthetic in for the moment.”

But these journeys are towing on the family’s budget. Grace explained the financial pressure: “Because we only got told the day before our appointment that we had to go up there. So it was like a bit of a short thing, we couldn’t get anything ready. So Nick [a family friend] kindly put out a fundraiser for us.”

Meanwhile, Vinnie’s elder sister, Mayah Udraufski, 6, has been doing her utmost to help care for her brother. Grace recounted: “It was very hard for her when we were in hospital. He was in the hospital for 65 days and she’s like my sidekick so it was very hard for her to try and understand why I couldn’t be by her side.

“But since he’s been home, she’s been absolutely amazing. She tries to help as much as she can in all Vinnie’s medical care, and she’s really understanding of everything he has to do. She wants to be a nurse now when she’s older. So it’s encouraging her and she’s just more aware of disabilities and everything for such a young age”.

Though it has been hard for the family, Grace said their faith helped them get through the situation better. She said: “It has affected my mental health a little bit. Before me and Rhys started going to church, we were completely different people. But because we’ve got our faith, it’s kind of helped a little bit because we’ve had so many people supporting us.”

You can support the family’s fundraiser here.

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