Thousands raised in memory of Newhaven baby diagnosed with rare and incurable genetic disease
Thousands have been raised in memory of a baby boy from Newhaven who survived an extreme premature birth against the odds, only to be diagnosed with a very 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.
The reflux was so bad he had to remain upright almost all of the time, which meant sleepless nights for his parents.
They made frequent trips to the doctor and consultants, who told them it was ‘just reflux’. “They thought we were overreacting,” Sam said.
But he and Leanne were certain there was something wrong.
Things got so bad that it was impossible for them to enjoy normal things that families do, like going for a walk.
Both parents were completely exhausted and tortured by seeing their baby so distressed: “We were fully at breaking point.”
Eventually Oliver saw a neurologist and an MRI revealed he had lesions on the brain.
The family was sent to a hospital in London, where they were given the devastating news that Oliver had a type of mitochondrial disease, a degenerative condition with no cure.
It was so rare that doctors said they had never seen this exact genetic mutation of the disease before.
Sam and Leanne were told Oliver did not have long to live.
It was heartbreaking news for the couple, who had already experienced such trauma.
“In intensive care, we had hope our baby’s going to be OK, he is going to be our special baby, a fighter,” said Sam.
“When we got hit with the reflux we thought, we’ve just got to dig in and get through these tough days.
“That got ripped away within a second.”
Oliver was taken back into intensive care at hospital in Brighton, where the ‘amazing’ staff helped care for Oliver during what would be his final weeks.
The couple began to speak regularly with Connie Yates, the mother of Charlie Gard, from the Charlie Gard Foundation.
Sam said this was hugely helpful. “We knew she had been through something pretty similar,” he said. “It was just really nice to talk to her.”
The charity even paid for them to have a cast made of Oliver’s hand, and a necklace with his fingerprint.
Sam and Leanne were keen to give back to the charity, and said they were surprised by the total they had managed to raise so far.
“We are going to keep it going as much as we can,” said Sam.
On the fundraising page, they paid tribute to their ‘beautiful’ and ‘perfect little boy’: “We miss you more than words could ever say.”
To donate, visit the fundraising page here.