An amazing community response has seen Lily Wetherall come within touching distance of getting the essential help she needs to live as normal a life as possible.
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.
Our original story is available here: https://www.bucksherald.co.uk/news/mum-s-plea-for-miracle-girl-born-without-a-brain-1-8746430
Sienna, Lily’s mom said: "We’ve had an amazing response to an appeal in the Bucks Herald to fund a specialist bed for five-year-old Lily Wetherall, but £826 is still needed.
"Lily’s story prompted a number of generous donations from the community towards the £5,490 specialist bed she needs to prevent her choking to death, including one made by The Parish of Waddesdon.
"Two Aylesbury based businessmen – Paul Harris of PJ Labour Services Ltd and Jamie Bone of Enterprise Skip Hire – also donated generously and a further donation was made by another local business who wished to remain anonymous."
The family now only need £826 to buy the bed Lily desperately needs to keep her safe at night.
Lily’s mum, Sienna, added: “I’m so grateful to everyone who has already donated towards the bed for Lily. I have been genuinely blown away by all this.
“I’m so emotional about the way people have shown they cared, especially the local parish who knocked on our door the same day the story came out. Our local MP Paul Irwin came round to see if he could help too.”
"We have a small house and it’s filled with medical equipment – and now baby equipment too as we also have a three month old, Riley, which has turned the house into something of an obstacle course.
“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.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “The generous donations received in response to Lily’s story have been overwhelming and it’s fabulous to see a community coming together like this.
“Unfortunately Lily is one of many disabled and terminally ill children who need our support across the UK, so we are appealing for anyone who could help us raise the outstanding funds so Lily can receive the bed.”
Anyone who is able to help Lily should urgently contact Newlife on 01543 431444. To donate £10 text LILY10 to 70070, email firstname.lastname@example.org or visit the website at www.newlifecharity.co.uk/buckinghamshire
Carrick added: "As well as Lily we currently have three other children in Buckinghamshire on our waiting list for specialist equipment and need to raise £7,000 to buy them all the equipment they need."
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.