Courageous little Lewis is inspiring a big charity effort to say thanks to NHS staff

BORN without ears and with a cleft palate and major breathing problems, little Lewis Grech has had a tougher start to life than most.

But his dad says despite his myriad medical problems he remains a “happy little chappy” who will soon celebrate his first birthday.

Lewis was born at the University Hospital of Wales in Cardiff on May 28 last year following a normal pregnancy.

“We knew straight away there was something wrong,” said dad Christopher.

“Nothing was picked up on the scans but when he was born the midwife noticed he had a cleft palate and no ears. They just looked like tiny peanuts either side of his head. We were just so shocked. It took us a good week or two to come to terms with it.”

Just days after he was born doctors diagnosed Lewis with Treacher Collins syndrome, a rare genetic disorder which affects the development of bones and other tissues of the face.

The severity of the condition can differ from person to person but in Lewis’ case it has affected his breathing, eating and hearing.

“We were told that Lewis had a spelling mistake in his genetic makeup. That’s how it was put to us,” added Christopher.

“It happens pretty much right from conception. In the most severe cases people with Treacher Collins syndrome don’t survive long after being born but most patients go on to live to a relatively normal age.”

While Lewis is classed as moderately to severely deaf he is able to hear with the help of a “bone-anchored hearing aid”, which sits on his head.

Christopher added: “As Lewis has an undeveloped jaw, which causes his tongue to roll back and obstruct his airway, he breathes through a tracheostomy tube.”

The tot spent the first three months of his life being looked after by nurses at the Noah’s Ark Children’s Hospital for Wales. Christopher and mum Angela, who live in Llanishen, Cardiff, spent every day by Lewis’ bedside.

“It would have been awful if we’d lived in West Wales or somewhere like that. But we did it in shifts. We have another child, Daniel, who’s three and we had to look after him too. He loves Lewis to bits but he’s a bit young to realise what’s wrong with his brother.”

After undergoing specialist training Angela and Christopher were able to take Lewis home when he turned three months.

“Our bedroom now resembles a medical room,” Christopher added.

“There’s medical supplies and machines everywhere. But we were really glad to have him home.”

Christopher is hopeful Lewis will be able to have the tracheostomy tube removed in time and will be able to breathe for himself. He will soon be enrolling in mainstream nursery.

“He’s quite a happy little chappy. He cannot make much noise but he’s always smiling.”

To give something back to the staff at the children’s hospital Christopher is taking part in a charity singathon on Lewis’ first birthday. All funds raised will go to the Noah’s Ark charity.

“The staff are fantastic. We had a really positive experience,” he added.

“He has a huge number of healthcare professionals looking after him and he’ll continue to be an outpatient at the hospital. We’re doing the singathon at Marco’s Cafe in Barry Island, which is a really good spot – and we’re covered if it rains.”

To donate go to www.justgiving.com/fundraising/christopher-grech