'I can't see you - please cheer for me'
PA MediaAn eight-year-old boy who has a rare disease that causes dementia, epilepsy and blindness has completed a 500m run using his walker.
Isaac Tilley, from Kettering in Northamptonshire, was diagnosed with Batten disease three years ago.
He took part in Ironkids Wales at the weekend with posters on his walker urging spectators to shout his name because he could not see them.
His mother Aimee said she "welled up" with pride when Isaac crossed the finishing line.
Aimee Tilley/PA MediaIsaac was diagnosed with CLN2 Batten disease - an inherited condition which causes childhood dementia, epilepsy and loss of sight - in August 2021.
His father Adrian Tilley has taken part in triathlons for the past 15 years and competed in Ironman Wales in Tenby, Pembrokeshire, on Sunday.
As the event approached, he thought it would be a good for his son, who "loves to be on his feet", to take on Ironkids Wales, a run-only event for those aged between three and 15.
Isaac speedily covered 500m using his walker and was rewarded with a medal.
His mother and full-time carer Mrs Tilley said: "Isaac just loved the atmosphere.
"Everyone was cheering for him and saying his name and, although he didn't understand exactly what he was doing, we were describing it to him as if he were doing a race and he smiled.
"It brings him so much joy."
PA MediaMrs Tilley zip-tied posters with the words "I can't see you. Please cheer for me" and "Go Isaac" to his walker to rally the crowd.
"With Isaac's type of Batten disease, he's losing his sight so he can't see very far in front of him," she said.
"We put the posters on the walker because we wanted people to say his name so he would know they were cheering for him and it helped him to go that little bit faster.
"I welled up a bit when he finished because I was so proud of him and also grateful to those who cheered."
The money raised by Isaac will help pay for physiotherapy sessions to strengthen his facial muscles and help with swallowing.
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