Thousands raised for 'perfect' baby born with rare condition

They say it takes a village to raise a child which could not be more true for Rhys James and his partner Grace who recently welcomed their son, Vinnie.

The three-month-old was born with Goldenhar Syndrome, an extremely rare condition affecting his face, heart and breathing.

The condition means Vinnie was born with one eye and a small jaw, as well as one of his ears being on his cheek.

"It's such a big deal to most people but it's inside that counts. His soul is so perfect," said Rhys.

More than £3,000 has been raised online to help fund trips to London where the couple hope Vinnie will be given a prosthetic eye.

Rhys added: "It's the biggest blessing we've ever received and we can't thank everyone enough."

"Obviously we had no knowledge of what it was and what it meant," said Rhys, from Bridgend, remembering the moment they received the diagnosis.

"It was scary because we just didn't know where we were going to go from there."

Through charities and social media groups, Rhys and Grace have only been able to track down one other family impacted by the condition.

"In one of the groups, there's another baby there who's got Goldenhar Syndrome - he has one eye and they were told that they were the only one in the world."

Vinnie's care means the family are often away from home, spending time at Great Ormond Street Hospital in London.

An appeal for the family has raised more than £3,500.

Mr James said he would "probably be in debt" as a result of the trips, if it was not for the donations.

"Money can dwindle really fast when you've got to be travelling around all the time."

Mr James said the support from his church had made the biggest difference.

The newborn also has a tracheostomy and is fed through a tube meaning he requires around the clock care from his loved ones, including his "caring" six-year-old sister, Myah.

"She's getting used to the care. She'll watch and learn. She's so caring."

When Vinnie was born Myah had questions about her baby brother's condition, but quickly understood, said Mr James.

"I don't think she sees him any different to anyone else.

Despite having a lot on their plate, Rhys said he and his partner were determined to do all they can to spread Vinnie's story.

"He's changing so many people's lives, including ours, bringing so many people together.

"He's already got a charm about him.

"I just want him to inspire people."