'˜I know my son and he is ready to walk'

Four-year-old Kyle Knight was only diagnosed with coffin-siris syndrome, one of the world’s rarest genetic conditions, last year and cannot yet walk or talk.

The condition affects various parts of the body and causes development delays and disabilities.

For Kyle, that included a delayed ability to walk.

His mum Alexandra knows he is desperate to be able to stand up and get himself about but the NHS won’t provide him with a frame which could enable him to do just that.

The 28-year-old, of Arley Close, Aspull, said: “He has no balance and he can’t follow instructions so he learns from doing and seeing things.

“They’re not giving him an opportunity to try.

“At home he just wants to do his own thing but I can’t let go of him - but he doesn’t want to be held.

“We’ve put down £1,000 as the amount we need to raise but we don’t really know.

“You have to order the frame and then things like the seat and wheels separately. Sometimes they can charge £320 for the frame alone.”

Despite having suffered problems since birth, Kyle was only diagnosed with the rare genetic disorder last year.

“Kyle has had problems since birth but it was only last year he was diagnosed,” Alexandra said.

He hasn’t been hitting his milestones; he has global developmental delay, which means everything’s delayed.”

“He can’t speak or communicate with us. We have learnt what his cries mean.

“He doesn’t really eat either but we don’t know if that’s to do with the coffin-siris syndrome or is something else.

“He is 18 months old in his head.

“He is standing and walking holding hands but can’t stand by himself this is why physio won’t approve the frame.

“We have to encourage him though to give him his independence. I know my son is ready because I know my son, it feels like he’s being held back without this frame.

“I know he is 100 per cent ready to try and walk and it is awful watching him try.

“When we go into town and he sees other children running around he strains against his wheelchair because he wants to get up and join in.

“But if I let him out I have to hold his hand and it would take us about an hour to walk down an aisle but he really wants to try.

“Kyle is such a fun-loving little boy he just wants to walk about like everyone else does and while we don’t have a walking frame it makes it harder for him to learn.

“He’s trying so hard, he will get moody and agitated when in his wheelchair and he’s around other children running and playing it’s not fair for him.”

To find out more or to donate, visit https://www.gofundme.com/vz4uh7dw.