DOCTORS feared he wouldn’t see his fifth birthday after discovering he had an ultra rare and incurable genetic condition as a baby - but now Blake Knaggs is preparing to start school.

The youngster, of Derwenthorpe, York, is set to attend Headlands School in Haxby for the first three days of the week, and then Hob Moor Oaks primary school, which supports children with additional needs, on Thursdays and Fridays.

His mum Louise said it was a big moment for Blake, who was one of only 57 children worldwide to have been diagnosed as suffering from Mucolipidosis II ML2, (MPS) in 2014.

“He is really looking forward to it, although I am a bit anxious about it but trying not to show it to him!” she said.

“His cousins Luna and Lola already go to Headlands, where they cater very well for children with additional needs, and lots of his friends from Polly Anna’s Day Nursery will be going as well.

“We chose a split placement for Blake’s school, as I feel this will benefit him in all aspects of his life. As Blake’s condition is degenerative, he may need more support in the future so I have the option to increase his days at Hob Moor Oaks if needed.

“Blake will also be able to tell me where he prefers, so it will also be his decision. All I want is for Blake to be happy and enjoy his school life experience.

“I have been struggling to get him a uniform for both schools though, as his size is only 18 to 24 months, so I’ve been doing a bit of shrinking and turning up of trousers!”

Louise said the big moment came just as she and her sister Joanne were making plans for their first charity ball for the Blake’s Genes Appeal, the fundraising drive sparked by his condition.

She said the event would take place in the function room at the Hilton Hotel near Clifford’s Tower on Saturday, October 6, and feature a dinner and dance to music provided by DJ Taz Barnes, a singer, magician and photobooth, and with plans for a raffle and blind auction.

Rhianna Smith, conference and events manager at the hotel, said it was backing the appeal for the second year running and had raised thousands of pounds through taking part in events such as the Dragonboat Race on the River Ouse. It is now also planning to enter the Micklegate Soap Box Challenge on August Bank Holiday Monday, and is supporting the ball.

Louise’s sister Joanne said the appeal had raised about £40,000 to date, with some of the money going to the Society for Mucopolysaccharide Diseases, which supports people affected by MPS and other related diseases, promotes research and increases public awareness. Some had also gone to Martin House Hospice, where Blake and his family stayed regularly. Funds had also paid for a sensory room in his home and might now buy Blake a new high-quality wheelchair so he could keep up with other pupils at school.

*For tickets for the ball, costing £45, email joanneaddinall@yahoo.co.uk or phone Rhianna on 01904 648111.