PARENTS of a little boy from Bude have expressed thanks to staff at the Bay View Inn, Widemouth, and members of the community, after they raised an astonishing £1,500 for their son.

Two-year-old Corey Alway has, throughout his short life, been living with an extremely rare condition, 16P13.3 Duplication Syndrome, polymorphic epilepsy and hydrocephalus.

The syndrome has delayed Corey’s development, meaning he is unable to walk, talk or do anything for himself, communicating through sign language and having to crawl to get anywhere.

Having around 300 seizures a day, Corey’s epilepsy has got progressively worse as he’s got older, with seizures lasting from 30 to 104 minutes.

His hydrocephalus (water on the brain) has caused suspended veins in his head, resulting in two bleeds in his life so far.

Previously, Corey suffered one major bleed during Christmas, meaning he and his family spent four months in hospital. Unfortunately, Corey has, more recently, experienced another bleed.

Swapping their time between Bristol and Barnstaple hospitals, Alan ‘Eggy’ and Holli Alway, Corey’s parents, do not have a bed suitable in supporting their son with his condition, meaning he currently sleeps on a mattress in their bedroom with Alan and Holli taking it in turns to sleep beside him to make him more secure when experiencing a seizure in the night.

Unfortunately, the NHS can only provide a bed that would protect Corey’s head. What is needed is a bed that also includes an alarm system that would alert Alan and Holli when Corey is having a seizure, which the NHS is unable to provide.

This is why the Bay View Inn began fundraising for this brave little boy.

Alan told the Post: “At first, we were reluctant to ask for help, but we were two full-time working people, and my wife has recently had to leave her job to become a full-time carer.

“The community has been fantastic; so many people in the area have done all sorts of things for Corey.”

With a lot of question marks next to the names of syndromes that Corey could be living with, doctors advised Alan and Holli to start ‘making memories’, so the family have recently moved into a bungalow to create a ‘nice nest’ for Corey, making him more comfortable.

Following the recent Bay Fest weekend in the summer, an event hosting music and entertainment at the Bay View Inn in aid of Corey, as well as the sale of wrist bands, a sponsored bike ride — raising approximately £220 — and even a swear jar at the bar. which raised £830 for the cause — Bay View has managed to raise an incredible £1,500 for the Alway family, which will be put towards purchasing a specialised bed for Corey.

On Sunday, September 11, Hayley Keene owner, and the staff of the Bay View Inn, invited Corey and Alan along to the cheque presentation of the donation.

Hayley said: “It’s so great because everyone at Bay View has tried really hard to raise as much as possible, and locally, everyone’s been getting involved with the fundraising too. The staff have been brilliant in helping to support the cause that we’ve been fundraising for.”

She added: “I think sometimes you forget how lucky you are to have a child with no medical issues, who are perfectly healthy and live a normal life.”

Describing the cheque presentation as ‘emotional’, Alan has expressed the family’s sincere thanks and appreciation. He said: “It’s like giving a giant hug. It’s so nice to know that everyone’s with us and it’s so good to know that Bude is there — they’re like a little army.”