MY OLLIE HAS ALMOST DIED FOUR TIMES
SMILING Ollie Meredith’s genetic condition is so rare that only 300 people have ever been diagnosed with it. It leaves the three-year-old unable to walk, talk or do physical or mental activities typical for his age.
But his mum Sophie Meredith says that despite all he’s been through in his short life, his amazing personality still shines through.
“He’s so funny and cheeky,” she said.
“They’ve registered him deaf and blind, but there’s no way he can’t hear as he loves music and dancing.
“He is one of the happiest, most lovable babies you will ever meet.”
When he was born, Sophie said she knew immediately that something was wrong with Ollie because of his distinct facial features. He was also unable to cry.
“He had dysmorphic features, like wide-set eyes, low set ears and a broad nasal bridge,” she said.
“But we didn’t get an official diagnosis until he was four months old. It came as a relief – but we didn’t know how bad it was going to be.”
Medics said Ollie had PallisterKillian mosaic syndrome, a developmental disorder caused by an extra chromosome which affects many parts of the body.
This condition is characterised by extremely weak muscle tone, intellectual disability, distinctive facial features, sparse hair, areas of unusual skin pigmentation and other birth defects.
“Since the condition was discovered in 1970 there have been fewer than 300 people with it – and no two are the same,” Sophie said.
“The doctor saw he had only a single palm crease, which is a sign something is wrong.
“She had to look up the syndrome herself before she told us about it.”
Sophie said Ollie is often ill, which leads to the family being in and out of hospital regularly.
“He has several seizures a day, and some of them can last for as long as 25 minutes. In those cases it’s a medical emergency and we have to put medication on his gums.
“It’s become the norm for us – and even for my friends – to see him having a fit.”
Sophie, who lives in Barry, said Ollie has almost died “four or five” times but has pulled through.
Although he is being given end-oflife care by children’s hospice Ty Hafan, it remains a mystery as to how long Ollie will survive.
Sophie said: “You have got to see a positive side to it. I feel a bit blessed to have a child so rare.”
But she said the family has also had to fight tooth and nail to get adaptations to their house.
At the moment they do not have any nurses staying overnight with them due to lack of space.
“We have managed to get our doorways widened and a few other things, but what he really needs is his own bedroom downstairs where a hoist can move him from his bed to the bathroom.
“We try and do as much as we can ourselves. We’ve got a home oxygen system for Ollie and pieces of equipment. I basically have had to learn how to be a nurse.”
Ollie, a pupil at Ysgol Y Deri special school in Penarth, has recently returned to his class after being ill since October 2017.
His family are trying to raise money for specialist equipment to make his life easier.