Meet five year-old Lily Wetherall - a youngster who who has defied this odds to survive without a brain, but runs the risk of choking to death unless money can be found for a new bed.
This week - and just in time for the festive season - her parents launched a desperate appeal to help their daughter - after cash-strapped NHS chiefs said they can only provide a standard hospital bed which is too big.
In a story which almost defies belief, Lily, who lives in Aylesbury, was born with a brain stem, but her brain cavity is filled with fluid. This means that she can miraculously survive without a brain.
But, Lily requires constant care - and 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 the Newlife children’s charity - 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 can only offer a full sized adjustable hospital bed, which won’t fit in anywhere in their Aylesbury home.
Sienna and Athony are now asking the 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.
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 so for regular physiotherapy.”
When Lily was born the couple were told the devastating news that their daughter wouldn’t survive more than a few months. 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.
Sienna added: “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.”
To donate to Lily’s appeal text – LILW10 to 70070 or donate at www.newlifecharity.co.uk/buckinghamshire - any more raised above the amount needed to support Lily will go towards helping other children on the waiting list.