Campaign to buy frame for boy, seven, to stand at home
Image copyright Aneta Butrym Image caption Maks’ mother says a frame at home would make all the difference to him The family of a seven-year-old-boy with cerebral palsy are campaigning for a specialist frame to help him stand and to play while at home.Maks Butrym has a frame at school which allows him to stand,…
The family of a seven-year-old-boy with cerebral palsy are campaigning for a specialist frame to help him stand and to play while at home.
Maks Butrym has a frame at school which allows him to stand, stretch and keep his hands free for activities.
But it is not easily transported and health officials say a statutory policy means a second cannot be provided.
One charity said it has 27 children on a waiting list for specialist equipment in Wales, with costs totalling £57,300.
Maks’ mother Aneta said without a second frame at home he misses out on playing with his brothers.
“He wants to stand up. He wants to see what’s going on. He is meant to be upright, not crawling all his life,” she said.
Maks, who was born at 25 weeks weighing 1lb 7oz (660g), cannot stand unaided.
He spent the first five months of his life in hospital, was blind for the first two years and had chronic lung disease until the age of four.
His family, from Ewloe, Flintshire, turned to a specialist disability equipment charity called Newlife to try to raise £1,316 to get a standing frame.
Another 26 children in Wales are on its waiting list, trying to get essential kit like wheelchairs, car seats and specialist beds.
‘Quality of life’
Newlife manager Carrick Brown said: “Children with complex disabilities often need several pieces of equipment to ensure they are able to fulfil their potential and be the best they can be.
“Not having a standing frame at home means Maks is forced to miss out on vital hours of therapy which really could improve the quality of his life.”
Maks’ mother Aneta said it would make all the difference to him.
“He is very optimistic, that’s his nature. But there are moments when he is unhappy, when he can’t do something.
“It’s important for parents to see their kids being happy,” she said.
Betsi Cadwaladr University Health board, which manages health services in north Wales, said that it was not able to provide another frame because of a national policy, but it said it had supported the family in directing them to the charity.