A desperate Highlands couple whose eldest son has a rare developmental disorder were forced to create their own homemade safe tent for their son to sleep in as their local statutory services were unable to provide a specialist bed.
Seven-year-old Alexander Milligan from Sutherland has Cornelia De Lange Syndrome with Autistic Spectrum Disorder which has caused profound learning disabilities. He has no awareness of danger, epilepsy and has been fed through a tube overnight since he was three months old.
Alexander wakes for long periods through the night, so after he outgrew his cot at the age of four his parents, Wendy and Colin, needed a way to keep him safe and ensure his feeding tubes stayed in place.
Mum Wendy said: “We were told by statutory services there were no beds suitable for him. When we discussed his needs with his Occupational Therapist they suggested we create a padded structure around a mattress, a bit like soft play – but this wouldn’t do anything to keep him safe as he would be able to wander around and pull his feeding tubes out.”
Unsure what to do next, Wendy began her own research online and discovered an American made tent designed to go over a bed which she thought would keep Alexander safe.
“I asked my sister who lives in America to bring it over. We paid for the tent ourselves and we carried on using this until Alexander was six – then he grew too big for and it and became able to push himself out. One night he was found on the other side of his bedroom with his feeding tubes hanging out.
“We needed help urgently. We were very worried about his safety, but when we spoke with his Occupational Therapist and Alexander’s Community Nurse, we were told there was no funding available.”
Again the family were forced to be creative and make adaptations to the tent. Then, last summer, the family were told by statutory services there was a bed available for him – which caused huge excitement for them all, including Alexander’s four-year-old brother George and nine-year-old sister Rosie. However, when it was delivered, it was immediately obvious the equipment wouldn’t keep him safe.
Wendy said: “The sides weren’t high enough to stop Alexander climbing over and there was no space for his feeding tubes. We suggested making alterations to the bed to make it suitable, which we said we would pay for. Statutory services refused but said they wouldn’t provide another bed either. The budget wasn’t available and we were just left to cope again.”
Wendy and Colin then heard about Newlife Foundation for Disabled Children – the UK’s largest charity funder of Children’s specialist disability equipment in the UK – from Alexander’s Occupational Therapist. After applying to the charity they were overwhelmed to be told a special £8,161 bed was to be made for Alexander with high sides so he can’t climb out, lots of padding so he can’t get hurt if he has a seizure and personalised holes through the sides for his feeding tubes to go through.
Wendy said: “The bed is amazing. From the moment it arrived we were delighted with it. He sleeps better, so we sleep better, and the overnight feeding is easier. He loves his bed now and climbs into it himself. This bed has made a massive difference and it will suit him for life.
“Newlife was really great and the application process was so easy. It’s such a battle to get any equipment usually; you don’t need an extra one!”
Newlife has provided equipment for 21 children in the Highlands, at a cost of more than £20,752. In the Highlands we need to raise £2,500 every year to ensure all children with disabilities or a terminal illness in the county get the vital specialist equipment that will really change their lives.
Earlier this year Newlife Foundation launched the Highlands Fund – www.newlifecharity.co.uk/highlands. It is an opportunity for local people to help local disabled children and every penny donated and fundraised in Highlands is guaranteed to support vulnerable families in the county.
Special disability equipment including wheelchairs, walkers, beds, seating and communication aids can help give children independence, keep them safe, relive pain and overcome challenges. For instance, you could help a child be discharged from hospital, take their first steps or kick a football with their friends…
The Newlife Highland Fund website – www.newlifecharity.co.uk/highlands – enables local people to find out who needs help in their county right now and includes contact details of the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and show specific ways people can help support children with disabilities or terminal illness and their families.
Pictured: Alexander Milligan