Boy, 5 ‘is only person in the world’ to suffer from crippling condition so rare it doesn’t have a name

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A five-year-old boy is the ‘only person in the world’ to suffer from a disease that is so rare it does not even have a name.

Ollie Lloyd has a chromosomal condition that has left him unable to walk, talk, sit or lift his head.

The youngster is also blind, has significant hearing loss in both ears and can endure up to 100 seizures a day. Doctors have been unable to give him a prognosis.

Ollie’s mother Louise Lloyd, 32, is his full-time carer, while his father Steve Sadecki, 34, was forced to cut back on his job at a supermarket when he kept needing unpaid leave.

The couple, of Barrow-in-Furness, Cumbria, have received nearly £4,500 ($5,431) in donations from friends and strangers to help them make ends meet.

With Ollie deteriorating as he gets older, the pair are hoping to fundraise an extra £10,000 ($12,071) to help them care for their son and pay their living expenses.

Speaking of his son’s condition, Mr Sadecki said: ‘We’ve been told Ollie has a deletion on one chromosome, and a repetition on another.

‘He was born with a small hole in the heart, a cleft palette, a problem with his pulmonary artery and bilateral talipes, which leaves his feet turned inwards. 

‘Doctors can’t give us a diagnosis, or a prognosis, as he is the only person in the world with this condition.

‘But when he’s well, and not in pain, Ollie’s a lovely little soul and even with all his problems, he’s very happy and content.’

Now five years old, Ollie only sleeps for two hours a night, leaving his parents severely sleep deprived.

‘We thought life would get easier [as Ollie gets older], but the opposite has happened,’ Mr Sadecki said.

A family friend has set up a GoFundMe page to raise £10,000 to help them with living expenses.

‘We are both quite proud people, so this wasn’t easy for us to accept,’ Mr Sadecki said.

‘At first, when the GoFundMe page went live, I felt I couldn’t leave the house to go food shopping, because people would think, “Look at him, out shopping and spending money”.’

‘No family in the position we’re in, with such a sick child, should ever have to beg. But I’m so glad we agreed to the funding page, because it really has helped us out a lot.’

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