On Air GEORGE KAY

: Waiting for next track...

Help make Christmas miracle for Waddesdon girl with no brain

Lily Wetherall with no brain

Published by Charlotte Fisher at 5:40am 21st December 2018. (Updated at 8:15am 23rd December 2018)

A five-year-old from Waddesdon born without a brain, is hoping you can give her a Christmas miracle.

Lily Wetherall was born at 32 weeks and sustained a bad brain injury which resulted from her twin dying. 

Lily 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.

Her mum, Sienna told us what it was like why they found out about her condition:

"Horrific.

"We thought we were over the worst of losing her sister, Paige.

"Then to find out a month later, your child has a life-limiting condition, it changes you forever basically."

A new bed for Lily

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.

You can help

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 so 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 Lily should urgently contact Newlife on 01543 431444.

To donate £10 text LILW10 to 70070, email local@newlifecharity.co.uk or visit the website here. 

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.

Email Icon

Sign up for exclusive news, competitions and offers.
Proper Local News updates from Mix96

  

 

Trending on Mix96

Woman found dead in Northchurch was ex-mayor

Police found two bodies at a property this morning.

Two people found dead in Northchurch

Police were called to Darrs Lane this morning

Another loved shop set to close in Aylesbury

Popular vintage store, Rocky & Kook, can't sustain overheads

Aylesbury woman jailed for life over husband's murder

Hannegret Donnelly domestically abused her husband until he died.

New store opens on Aylesbury retail park

The Range is opening today on Broadfields

More news...