Youngster Ellis Gooch was born ten weeks early with sepsis and was diagnosed with two holes in his heart. He also suffered a devastating brain bleed.
An MRI confirmed brain abnormalities and he was diagnosed with severe autism at the age of two.
The condition means Ellis has absolutely no understanding of danger; he’s also unable to talk or walk far without support.
Ellis is fed through a tube into his tummy for several hours at night, which often makes him vomit and choke and he will try to pull the tubing out – meaning it is vital he’s kept at the right angle and supervised throughout nights.
And although Ellis goes to sleep between 6pm and 7pm he’s usually awake from midnight.
This has left his exhausted mum, Kerrie Waterworth, revealing how she has no choice but to stay awake with him to prevent him from hurting himself; he’s now big enough to pull himself up over the sides of the bed and tries to grab anything he can, including curtain poles and light fittings, risking a serious fall.
With no funding available for a larger specialist bed for Ellis through health and social care in Lancashire, Kerrie has turned to Newlife the Charity for Disabled Children for help.
The charity is now urgently calling on the local community to help raise the £3,223 needed for the specialist bed to help prevent Ellis from injury.
Kerrie said: “The specialist bed Ellis has used for the past two years just can’t keep him safe anymore.
"I’m so terrified he’ll fall over the side and seriously hurt himself, so have no choice but to stay next to him and watch him through the night.
"I need to ensure Ellis is safe – it’s what any parent would do.
"My dad and nana help when they can and I try to nap in the day when possible, but I’m completely exhausted, and despite having no sleep still need to look after Ellis and his sister Amy-Leigh, who’s eleven throughout the day too.
"The specialist bed Ellis needs would see him through until he becomes an adult. It has high sides and a mesh canopy so he can’t climb out.
"It will make changing him and giving medications much less stressful because it can be elevated up and down while fully supporting his posture. It will also mean he won’t choke when his night-time feeds make him sick.
"It also has built-in holes for his feeding tubes and access for a hoist, which he’ll need very soon as he’s almost too heavy for me to do lift up and down – it’s causing me serious back ache now too.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “It’s vital Ellis has a larger specialist bed to keep him safe at night and meet his complex health needs as he grows. Caring for Ellis is also putting pressure on his mum, she’s exhausted.
"Having a specialist bed would also mean his mum gets the rest she needs to continue caring for him now and in the future.
"We would love to help Ellis and his family, but we simply don’t have the funds available so are calling on the people in Lancashire for help – please if you can, make a donation today or fund-raise to help him, as soon as possible.”
You can also text NEWLIFE ELLIS to 70500 to give £10 to ELLIS appeal. Newlife will receive 100 per cent of your donation. Texts cost £10 plus one message at your standard network rate.
Ellis is just one of 35 children in the North West on our waiting list and in desperate need of specialist disability equipment costing a total of £100,139. Money raised above the amount needed for Ellis to have a standing frame will be used to help other disabled and terminally ill children in need in the North West.