The family of a baby who was born with a rare condition leaving him without one eye and with an ear in the wrong place, have thanked people for their support as they travel between Wales to London for hospital visits.
Grace Ellis, 25, and Rhys James, 26, from Bridgend, had their little boy Vinnie in November 2024 in Glangwili Hospital in Carmarthen.
Soon after his birth, doctors gave Vinnie a diagnosis of a rare condition called the Goldenhar Syndrome, which is said to affect one in every 3,000-5,000 births, with the majority of them being boys.
Mum Grace said it was “a complete shock.”
Grace said: “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.”
Just three months old, Vinnie has been constantly undergoing procedures and scans since he was born.
He was also found to have sleep apnoea, leading to tracheostomy. This means that he breathes through a tube that’s been fitted in his neck, and is fed through a nasogastric tube.
Grace added that it was hard to see her son go through so much at such a young age.
She said: “At first, it was quite daunting because you go through the stages of, ‘Why has this happened to my child’.
But 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 added that even with all that he’d been through, Vinnie had been ‘amazing’, even already developing an ‘attitude’.
She explained, “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.”
Vinnie has to go to Great Ormond Street Hospital in London regularly so he can be fitted with a prosthetic eye, but the process is gradual and will require several trips to the hospital before he’s fitted with a permanent one.
Grace added: “With the hotel, paying congestion, petrol, parking and everything it cost us about £300 yesterday, and we’ve got to do that every two weeks.”
Expressing her gratitude to those who have supported the couple, Grace said: “We’d like to say thank you to everyone that’s supported us. If anyone who’s in a situation that has a disabled child wants to reach out to me, and Rhys, we are more than happy to help them and to guide them in the right place.”
She added: “Just keep on going. There’s so many times that I’ve wanted to give up because it’s not something that I’m used to doing.
“The way I think of it is God only gives disabled children to people that he knows will love them and keep them safe. I just think of that in a way, if they’re so special and unique that you just need