Ryan Anstey from Bristol has a progressive muscle wasting disease which can leave him in such discomfort he can wake every hour through the night, needing his family to help him find a pain-free position.
The 11-year-old has been sleeping in a standard bed but as the symptoms of his Duchenne Muscular Dystrophy have worsened the family from the Bradley Stoke area realised he needed a specialist bed which would support him properly, keeping him safe and relieving the pressure on his body to prevent painful sores from developing.
As well as having Muscular Dystrophy which will gradually get worse over time, Ryan has a mild heart condition, has learning difficulties and he is on the Autistic spectrum. As well as being a full time wheelchair user Ryan needs support with sitting – which is another way a specialist bed will help as it means he can raise his upper body at the touch of a button, giving him some all important independence.
Although their local statutory services can provide hospital beds, they have nothing of this type to offer Ryan, but will provide £1,040 towards the cost of a specialist bed which is more suitable. As the total cost of the bed is £2,544 the family turned to the UK’s leading children’s disability charity, Newlife Foundation, for help.
Mum Alison said: “The Muscular Dystrophy has progressed to the point where he needs extra support now to be comfortable. Having a bed which can be raised up will also make it easier for me and his dad, Vernon, to care for him and we’d like Ryan to have something suitable for his individual needs.
“Ryan is a happy little boy. He loves his computer and likes to look up roads on Google Maps and he is really into his music, especially chart dance music. He also has a really wicked sense of humour and loves slapstick comedy films.”
As well as being more comfortable for Ryan, Alison is also hoping that not having a solid mattress will mean he sleeps a little longer than 60-90 minutes before he wakes to be repositioned which is the current situation.
Alison said: “Some nights are better than others, but we don’t tend to get much sleep, which can make life difficult. We try to get out with Ryan and his younger brother Dan who is ten, but we are all tired. When Ryan is up through the night shouting it means Dan is tired at school the next day. It also means he can’t really have friends stay for a sleepover. Vernon drives for a living so he doesn’t get up with Ryan as he needs his rest so he is safe; but it has an impact on us all.”
Newlife CEO Sheila Brown, OBE, said: “Demand on our practical support services is growing and we are increasingly calling on ‘local heroes’ to help fund vital specialist equipment for children in their own areas.”
Newlife operates a social enterprise business which covers the costs of its core services; because of this the charity guarantees that 100 per cent of all monies donated or fundraised will be used to fund the equipment for Ryan. Any surplus money raised will be used to provide equipment for other local children with disabilities and terminal illness. Newlife has already helped 41 children in Bristol.
The Newlife Community Fundraising Team can be contacted on 0800 988 4640 (free from UK landlines). Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance. To find out more about the range of equipment grant and loan support services offered by the charity, call the Newlife Nurse Helpline on 0800 902 0095 (free from UK landlines) or email [email protected]
Pictured: Ryan Anstey