Published: 00:01, 11 June 2018
As one of the only people in the world with the debilitating disease Vici, little Rupert Moore has suffered more in his short life than most. Now the 18-month-old's family have launched a campaign to make it more bearable. Jack Dyson reports.
In October, one-year-old Rupert Moore was admitted to the Evelina Children’s Hospital in London with breathing problems.
Two months later, he was diagnosed with the rare condition Vici, becoming the only living child in England with the disease.
Only about 100 cases have been documented around the world, with sufferers typically dying before their fourth birthday. Just one is known to have survived beyond the age of 11.
During the pregnancy it was thought Rupert may have cerebral palsy, but after several tests, his mother, Camilla Crick, was told he would be healthy.
“We didn’t know what to expect when he was born, but we didn’t think he’d have anything like this,” she said.
“He was a much quieter baby than my other two - probably too quiet. I was devastated when we were told he had Vici. Very few doctors actually know about it, so that’s why it took a long time to diagnose him.”
Ms Crick noticed there was something wrong when she realised he “couldn’t do what other babies were doing, like holding his head up and rolling”.
“Vici affects his whole body,” she said. “It affects his breathing, means he has no mobility, problems with his heart, poor vision, hearing loss, his muscles are so weak and he can’t talk or eat.
“He can’t do anything; he’s like a newborn baby because he can’t even hold his head up.
“Whenever he gets the flu, he ends up in hospital. He’s probably been in hospital about 15 times since he was diagnosed.”
Rupert, who is now 18 months old, was recently discharged from the QEQM Hospital in Margate after he struggled to urinate and eat.
Among the symptoms of Vici are seizures, cataracts, visual impairment, hearing loss, and the failure of the muscles and brain to develop properly.
Heart failure and diseases to the organ’s muscles are prevalent in about 80% of sufferers.
“We want him to live for as long as possible – he’s my baby" - Camilla Crick
There is currently no cure for the illness and treatment for it is purely supportive.
“We want him to live for as long as possible – he’s my baby,” Ms Crick, 25, continued.
“He’s on oxygen every night because his breathing pauses when he’s asleep. Over the last couple of weeks we’ve started to notice his legs really stiffening.
“He starts crying in pain when it happens and we don’t know if it’s a seizure or spasms. He doesn’t sleep at the moment – he wakes up after an hour screaming in pain.
“As he gets older he’ll deteriorate more.”
His mother is hoping to raise awareness of Vici and money to go towards improving her garden to give Rupert added comfort outside.
“At the moment, there’s nothing out there for him to sit on,” Ms Crick said.
“We want to make it safe for him and get any equipment he needs to make him as comfortable as possible, like a swing.
“We’d like for him to be in the garden with us because he loves being outside.”
A coffee morning was held at The Heron pub in Station Road on Friday, May 25, and a charity quiz recently at the same venue.
The family, from Broomfield, is also planning a sponsored walk in September.
n To donate, visit www.justgiving.com/crowdfunding/alisha-sandell and for more details visit the Rupert’s Journey Facebook page.
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