Anyone who has had a late night followed by an early morning knows how hard it is to function on minimal amounts of sleep – but can you imagine trying to care for your disabled children sometimes surviving on no sleep at all? That is the reality of life for Jon and Rita Orr from Newtownards in County Down.
Their two sons, Callum and Lee, are both on the Autistic spectrum, with seven-year-old Callum displaying extreme behaviour as a direct result of the disorder. Coupled with severe learning difficulties, Callum is unable to speak and will often hurt himself by running into walls or hitting himself in the face to gain sensory input. His chronic sleep difficulties mean that he will be awake for many hours through the night and although he has medication to help with this, his father still has to sleep next to Callum in order to help him settle and keep him calm.
Callum will frequently wake in the very early hours of the morning and Jon has had to take his son out in the car to help him settle back down and to prevent disturbing his other son who attends a mainstream school and struggles when he is tired. Jon himself then has to go to work full time!
The family had become so desperate for a solution to help Callum that they turned to Newlife Foundation for Disabled Children – the UK’s largest charitable provider of essential equipment to meet the specialist needs of disabled and terminally ill children – to see if it could help.
Recognising the urgency of the situation, the charity provided Callum with the loan of a Safespace Voyager bed which has helped Callum have somewhere safe that he can relax when he is finding things difficult. This has helped Callum settle better at night but he is still waking early and the loan is only for a sixth month period while a permanent solution is sought. What he really needs is a full size Safespace – a special bed that is designed especially for children with needs like Callum’s. With the bed costing £4977, Newlife is now appealing to you, local heroes who might be able to help raise the money to get Callum the equipment he and his family so desperately need.
Callum’s mum Rita said: “Having the voyager on loan has given Callum a sanctuary, an area of his own where he feels safe. It gives us peace of mind knowing that when he is in there he can’t hurt himself and he has now started going into the Voyager when he wakes in the early hours so Jon doesn’t have to take him out in the car as much.
“This means that we are all getting more rest which is particularly important for our elder son Lee – although he has Asperger’s and ADHD, he is in a mainstream school so when he is tired not functioning as well, they are less equipped to cope with him.”
She added: “Having a Safespace of his own would mean the world to Callum and to us as a family. The most distressing thing for me as his mum is when he tries to hurt himself, but the Safespace is a safe environment for him and it is big enough for us to be able to put other equipment in that will allow him to get sensory input without hurting himself.”
Newlife foundation has already provided 140 children with £187,614 of equipment but with more and more applications coming in on a daily basis, the need is still high. In response to this growing need, Newlife set up a dedicated County Down Fund – www.newlifecharity.co.uk/countydown – giving local people the chance to help local disabled children like Callum, and every penny fundraised or donated in County Down is guaranteed to support families in the county. The Newlife County Down Fund supports equipment provision for under-19s facing any significant disability whether acquired through birth defect, prematurity, accident or illness.
Newlife guarantees that 100 percent of the money donated or fundraised for Callum will go towards his special bed and any surplus funds will go towards helping a disabled or terminally ill child in the County Down area.
Further information about the Newlife County Down Fund – and how to specifically donate or fundraise to help Callum – can be found by going to www.newlifecharity.co.uk/countydown or emailing [email protected] Telephone donations can be made by calling 01543 462777.
Pictured: Callum Orr