A ‘miracle’ five-year-old born without a brain is at risk of choking to death because the only bed the NHS offered was too big to fit in her house.

Lily Wetherall has a brain stem, but her brain cavity is filled with fluid. She has up to 20 seizures a day, often triggered by the very slightest noise.

Until recently she slept in a standard bed with four bed rails, but a deterioration in her condition means she’s no longer able to clear her own airways and chokes if she’s in the wrong position.

Unable to quickly get a specialist bed from the NHS, Lily’s parents Sienna and Anthony turned to Newlife who urgently delivered a bed through its emergency equipment loan service, alleviating the immediate risk to Lily’s safety.  However, she urgently needs a permanent bed but NHS Buckinghamshire will only offer a full sized adjustable hospital bed, which won’t fit in anywhere in their Aylesbury home.

Newlife is now calling on the local community to help raise the £5,490 needed so Lily can have a specialist bed of her own to keep and that doesn’t put her at risk.

Mum Sienna said: “The NHS won’t consider anything but a full sized hospital bed, which we physically cannot fit anywhere.  We have a small house and it’s filled with medical equipment. It’s also far bigger than anything Lily needs as she’s very small for her age.

“Not having a permanent specialist bed for Lily is such a constant worry. Making things worse is that Lily’s also due to undergo surgery to put both hips back in their sockets and relax the muscles in her legs which are constantly so tight she can’t straighten them.

“An adjustable bed means she wouldn’t have to endure painful transfers to the floor for regular physiotherapy.”

Sienna and Anthony, were told their daughter wouldn’t survive more than a few months after birth. Then that she wouldn’t live to celebrate her first birthday. Lily is due to turn six in the spring and her family count every day as a blessing.

“We are so lucky Newlife was there to help us. There is nowhere else you can get emergency loans of specialist equipment for children. It’s also infuriating that the NHS have a ‘one size fits all’ mentality when it comes to their provision of equipment. Not every child, every family, has the same needs.

“Having our own specialist bed for Lily would make life much easier, it’s everything to us right now.”

Newlife’s Senior Manager for Care Services, Carrick Brown, said: “We would love to help Lily and her family, but we simply don’t have the funds right now so we are asking people in Buckinghamshire to make a donation or fundraise to help her, as soon as possible, so she is safe and pain free.”

There are currently three children in Buckinghamshire on the waiting list for almost £7,000 of equipment.

Anyone who is able to help Holly should urgently contact Newlife on 01543 431444. To donate £10 text LILW10 to 70070, email local@newlifecharity.co.uk or visit the website at www.newlifecharity.co.uk/buckinghamshire

Money raised above the amount needed for Lily’s specialist equipment will be used to help other disabled and terminally ill children in need in Buckinghamshire.

For the past five years Newlife has been running the UK’s first and only Emergency Loan service, delivering specialist equipment to disabled children in crisis within 72 hours of request.

Despite most local health and social care services having jointly commissioned integrated equipment stores to cater for the emergency needs of adults, no such public service exists to respond to the urgent, often life-threatening, needs of disabled or terminally ill children.  As a country we’re failing some of the most vulnerable in our society.

Sheila Brown, Newlife CEO, said: “We’ve proven an emergency equipment service works, but more worryingly, that there’s a desperate need for this type of rapid response for specialist equipment for children. We must ensure that no child is in danger because they don’t have the right piece of equipment and are calling on government and local services to introduce local based emergency equipment services – it really is a matter of life and death for some children.”