A Derbyshire eight-year-old with a rare brain condition that means he can’t walk, talk, sit up or even hold up his own head, urgently needs a specialist seat to keep him angled in just the right position to keep breathing.

Patrick has a limited life expectancy and has frequent intensive care admissions for severe chest infections which can be a constant threat through the winter months. Despite two types of medication to prevent violent seizures, these are still triggered by illness and lack of sleep.

He also needs to be fed through a tube into his stomach, has a dislocated hip, and struggles to clear his own secretions, so he can easily choke and breathe fluid into his lungs, risking more chest infections. The only place Patrick is comfortable and can easily be positioned to protect his airway is in a specialist seat called a P Pod – but after outgrowing the one he had, his family could only access an old one on loan from his school, which is far too big to support him and is falling apart.

A new P Pod in Patrick’s size will cost £2,284 so his mum, Victoria, has turned to us at Newlife, the largest charity provider of specialist disability equipment, for help.

Victoria is unable to leave Patrick’s side for a second and feels the responsibility of watching him for even a minute is too much to ask of his siblings, twin brother Frederick, Travis, 14, and 13-year-old Phoebe.

“I can’t leave him for a second at the moment – and I don’t like to ask his siblings to watch him for a minute as it’s so much responsibility for them, as anything could happen at any time with Patrick,” says Victoria.

“But in a well-fitting P Pod, I know he would be safe and supported.

“It also means I’d be able to give Patrick his tube feed safely and comfortably. At the moment he has to have it on the floor as it puts less pressure on his stomach. The only other option is the rigid high-chair type seat we have from health and social care but he’s very uncomfortable in that and there’s no way to keep his head in the right position either.

A recent Family Fund survey revealed nine out of 10 families with disabled children are struggling or falling behind with household bills, with many forced to do without things like food, heating or basic furniture. It highlighted the unsustainable strain families’ face as they try to cover sky-high costs on top of severely reduced incomes due to intense caring responsibilities and the three-times-higher cost of looking after a disabled child.

Kam Dulai, Newlife’s Child and Family Support Manager said: “Patrick deserves to be as safe and comfortable as possible and it’s clear this specialist seat will make such a huge difference to his life. Anyone who can donate to this appeal will be directly helping to change his life for the better.”

Any money raised above the amount needed for a P Pod for Patrick will be used to help other disabled and terminally ill children in need so please give what you can.