While most mums might relax after their three-year-old has gone to bed, Sarah Shoebridge remains on high alert.
The 43-year-old, of Banchory, rarely gets more than a couple of hours sleep as she watches over her son Saul, who suffers from a rare skull condition which keeps him awake for 22 hours a day.
The tot was born with craniosynsotosis – a condition that causes a child’s head to be born misshapen and causes eye, ear and other troubles, as well as headaches stemming from inter-cranial pressure.
At just nine months he had major surgery on his skull, but the condition – as well as a sensory processing disorder – causes him to act out in order to stimulate his brain.
Saul is also autistic and suffers from Burnside-Butler Syndrome which can lead to epilepsy and other issues in later life – and has a high pain threshold and no danger awareness.
His condition meant when he was sleeping in a cot he would wake up an run around making noises, often running into walls and banging his head.
Desperate to protect him from harm, Miss Shoebridge requested a specialist bed from Aberdeenshire Council.
But she was turned down after being told she was a low priority case – forcing her to erect a playpen around Saul’s mattress.
And, as he got older, she had to place a tarpaulin across the top of the playpen to keep him enclosed until he fell asleep.
Following Aberdeenshire Council’s decision, Miss Shoebridge was referred to children’s disability charity Newlife Foundation, who gave her a six-month loan for a special bed for Saul.
The charity is also now helping her fund the £4,500 needed to buy one for herself which would ensure Saul can spend nights harm-free in his own room.
She said: “He realised when he grew older he could get himself over the play pen and I had to put something over the top of the play pen until he fell asleep and then I’d take it off.
“I was told by Aberdeenshire Council to go and apply for the bed through the charity themselves. It is not nice to be told you are not a priority at all but I moved on.
“At least I know there is an area he can go now. But we need a permanent one.”
A spokeswoman for Aberdeenshire Council said: “We do not comment on individual cases but we always work closely with families and partner organisations in order to get the best outcome for them and the child.”
Challenging life
Mother-of-two Sarah Shoebridge said her son would have a challenging life due to the condition he was born with.
She said: “He is going to have challenges throughout his life, along with that he has other sensory processing disorders. He could actually injure himself quite easily.
“Apart from that he is absolutely fine, there are days when he will just sit in a corner and not interact with anybody and days where he is interacting but just talking to himself, he doesn’t need people around, he lives in his own world.
“He is never still. He can feel pain but it is going to have to be something major.
“There are days I wish I could have more than a couple of hours sleep but at the end of the day I am his Mum and I am going to do the best I can for him.”
Miss Shoebridge said the specialist bed gifted to her by Newlife had brought about a huge improvement within her home.
She hopes secure a double-sized bed for Saul which will last “until he is an adult”.
To help support the charity, visit www.newlifecharity.co.uk