Meet the Milton Keynes schoolboy, 12, facing a daily battle against developing dementia

A young schoolboy who could be struck down with full-blown dementia at any time is determined to live life to the full on his 13th birthday.

Thursday, 10th October 2019, 5:28 pm
Joshua Cullip

Joshua Cullip was diagnosed with a cruel and rare degenerative condition called Niemann Pick Disease Type C when he was just a baby.

His mum Jodie O'Grady was told he may not survive more than a few years and found herself anxiously watching every day for signs that her son's brain and body were declining.

Today Joshua is a spirited, caring and active boy who is crazy about wrestling, his XBox and friends he has made at Redway special needs school on Netherfield.

Joshua Cullip with Countryfile presenter Matt Baker

But sadly he is already showing signs of losing motor function and cognitive skills that will eventually lead to dementia, said Jodie.

Last year Joshua was doing well at a mainstream school but his short term memory started fade and he began forgetting how to write words and do sums.

“Physically he is declining too. His head drops onto his chest because his muscles are degenerating. His feet are curling inwards and he is finding it more difficult to walk longer distances," said Jodie.

Last autumn Joshua appeared on BBC's Countryfile programme where he climbed a mountain in the Isle of Skye with presented Matt Baker.

"That was almost exactly a year ago, but he wouldn't be able to manage it today. You don't realise how much he has degenerated until you look back," said Jodie.

The Neimann Pick, which is dubbed 'childhood Alzheimer's' is also slowly robbing Joshua of the ability to swallow properly and his diet has to be carefully monitored.

"Eventually he will no longer be able to talk, walk, feed himself or breath unaided and will require round the clock care," said Jodie.

"This illness is cruel and there is no cure as yet. But we live in hope for a miracle every day and until then we concentrate on making the life he does have wonderful and full of great experiences."

To celebrate Joshua becoming a teenager, the family is organising a charity wrestling match on October 20th at Jury's Inn at 3.30pm. Tickets are still available online here.