Thousands raised in memory of Newhaven baby diagnosed with rare and incurable genetic disease

Much-loved baby Oliver passed away on April 13 at just eight months old, having spent much of his short life in hospital.

His parents Sam Williams, 29, and Leanne Cracknell, 31, are now raising funds for the Charlie Gard Foundation, which has been supporting them.

More than £3,000 has already been raised. Leanne, 31, said it was ‘something small but good’ they could do in Oliver’s memory.

She was just six months pregnant when, while holding her newborn niece for the first time, she went into labour with Oliver.

He was born on August 16 at just 24.6 weeks, weighing 740 grams – less than a bag of sugar – and measuring just ‘a tiny bit longer’ than his father’s hand.

It was a very difficult start to life, with Oliver kept on a ventilator in intensive care for 26 days.

“We both didn’t get to hold him for quite a while because he was so poorly,” Sam said.

During this time Oliver also suffered further complications and had problems with his breathing.

Sam said: “There were a few times where we didn’t think he was going to make it.”

Due to pandemic restrictions, only one parent was allowed to be in with Oliver at any one time, and Sam said: “It was a really weird experience of spending every evening and weekend down at the hospital – one in the car park, one with him – and then switching over.”

It meant Oliver did not get to meet his other family members until he was four months old.

His parents had a goal to get him home for Christmas – and fortunately they were able to.

But their joy at being home with their baby boy was short-lived.

Oliver began to experience severe reflux and would also scream constantly – for hours and hours at a time.