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 Langford, from Ilkeston, 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, turned to Newlife the Charity for Disabled Children for help. Now the charity has launched an appeal to help raise the funds necessary to provide the specialist seat. Newlife is the largest charity provider of specialist disability equipment in the UK.
Patrick’s mum, Victoria, said: “I’m terrified of what this winter will mean for Patrick. The P Pod we have is virtually unusable now and, as it’s too big, his head drops forward, which can cut off his airway and he can’t lift it back up himself.
“I know Patrick will suffer without a P Pod and I feel his health will deteriorate more quickly. It’s a vital piece of equipment – there are so many reasons why we need one for him that fits him. He’s in the right position to breathe, safe if he has a seizure, his posture is supported so prevents his spine curving further and he can sleep comfortably which reduces his seizures.”
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.
“The P Pod we have won’t last much longer and I don’t know how we will cope this winter with the one we have, let alone without one at all. To be able to have the P Pod he needs in time for Christmas, or to know it’s on its way, would mean everything to us. It would be life-changing. Patrick can’t talk, but if he could, I know the P Pod is all he would wish for.”
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.”
You can donate to help Patrick here, contact the Newlife fundraising team at email@example.com or call 01543 462 777. Always get the bill payer’s permission. 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.