Sleepovers with grandparents and family trips away are ‘the norm’ for many children. But for four-year-old Bolton boy Rhys Taylor, these activities are currently not possible – due to him having Angelman Syndrome, a rare genetic disorder which presents with severe Global Developmental Delay.
Rhys, who lives with parents Sheri and Heath and his younger sister in the Compton area of Bolton, suffers frequent seizures and has difficulty sleeping. He has no awareness of danger and needs constant supervision.
At home he is kept safe at night by sleeping in a specialist cot bed, which has high sides so he can’t topple over and is padded to prevent him hurting himself. But Rhys, a pupil at Green Fold School in Bolton, is too big to use a standard travel cot – so the Taylors have been unable to visit friends around the UK or travel to Zimbabwe to visit Sheri’s family.
Sheri said: “My in-laws live close by and they would love to help support Rhys by having him to stay occasionally; unfortunately this is not possible because he wouldn’t be safe in a regular bed. We long to do ‘normal’ things like go away and stay in a caravan or bed and breakfast, but this isn’t practical either.
“Rhys’s condition can be quite isolating – many of our friends live in and around London, but we are no longer able to visit for the weekend because of the same safety issues and it is too far to travel there and back in a day. Being able to visit again would be great because our friends’ emotional support has been very important to us, helping us get through the difficult times with Rhys.”
The portable bed that Rhys needs to ensure his safety away from home is called a Safespace Voyager, but the cost – £2,699 – prompted the Taylors to turn to leading UK children’s disability charity Newlife Foundation for help with funding. The family has pledged £380 towards the cost of the equipment.
Newlife has funded 303 equipment grants totalling £405,164 for disabled and terminally ill children in Lancashire and the Greater Manchester area.
However, demand on Newlife resources has shot up in recent months and the charity is appealing for ‘local heroes’ to come forward to fundraise or donate towards the cost of equipment for children in their area.
For instance, Newlife supporters can choose to take on a sponsored sporting challenge, host a coffee morning or cake sale, make and sell handcrafted goods, organise a pub quiz or community car wash, hold a sponsored silence or stage an evening of entertainment.
Newlife CEO Sheila Brown said: “Newlife guarantees that 100 per cent of any gift or donation will go directly to provide Rhys with the Safespace Voyager he needs. Any money raised surplus to his requirements will be used to fund equipment for other disabled and terminally ill children in the Greater Manchester area.”
If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Pictured: four-year-old Rhys Taylor.