The mother of a severely ill two-year-old boy believes her son will defy doctors who say he will die before his fourth birthday.

Rupert Moore is the only living child in England diagnosed with the rare condition Vici.

Only about 100 cases have been documented around the world, with sufferers typically dying as infants. Just one is known to have survived beyond the age of 11.

Since he was diagnosed with the condition towards the end of 2017, Rupert has regularly been admitted to hospital with a variety of ailments.

“A few weeks ago, he got rushed to the QEQM with suspected sepsis,” his mother, Camilla Crick, said.

“He went really grey, he couldn’t breathe properly, his lips went blue and he started being sick.

“The doctors couldn’t say for certain if it was sepsis, though, because they couldn’t test his blood even though they tried to get it out of him eight times. It was really distressing for him.”

Prior to that, Rupert had spent eight weeks in hospital with infections in his airways.

Following this, he was prescribed an aspirator, which Ms Crick uses to remove accumulations of phlegm from his throat.

“It sucks it out from his mouth when he starts coughing,” the 25-year-old added.

“Before, it would go back down his throat and cause chest infections, so this machine will hopefully stop that. It seems to be working at the moment.”

Among the symptoms of Vici are seizures, cataracts, visual impairment, hearing loss, and the failure of the muscles and brain to develop properly.

“The doctors don’t know anything about his condition...." Camilla Crick

Heart failure and diseases to the organ’s muscles are prevalent in about 80% of sufferers.

There is currently no cure for the illness and treatment for it is purely supportive.

Rupert is registered blind, unable to speak, eat, move or hold his head up unassisted.

“He has a really tough life, but he’s happy and smiles a lot,” Ms Crick added.

“The doctors don’t know anything about his condition.

“All we get told is they are giving him until he’s three-and-a-half, but I feel that’s just a number and that Rupert’s going to prove everyone wrong.”

His mother is hoping to raise £10,000 to fund a number of improvements to her Broomfield home to provide him with added comfort.

She will also use the money to buy a specialised pushchair that she hopes will prevent Rupert from developing back and hip complaints.

“It’ll be more comfortable for him,” Ms Crick said. “Rupert’s never going to be able to sit up, so I want him to be as comfortable as he can in his chair.

“Out of all the buggies I could get on the high street, the one he’s got was the best I could get.

“But his posture is restricted in it and it stops him from lying back as much. He gets agitated when he’s been in it for too long.”

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