The heartbroken parents of an 11-year-old boy who died in his bed on Christmas Eve have spoken of their devastation.
Amy Millar and Gareth Brown were left shocked after their severely disabled son, Bailey Brown, passed away unexpectedly at the family’s Longhoughton home on Wednesday, December 24.
The youngster, known affectionately as Bop Bop, was left wheelchair-bound with cerebral palsy after he was starved of oxygen during his birth, in February 2003.
His grieving mum and dad are still waiting to find out what caused the sudden death of their son, who will be remembered for his infectious smile and happy personality.
“His death has left a void in our lives and we miss him dearly,” said Amy, 27, who received a £2million settlement in 2008 from Northumbria Healthcare NHS Foundation Trust to provide for his future care, following the birth trauma.
Speaking about the Christmas Eve tragedy, Amy said: “Bailey wasn’t 100 per cent, but there was no sign that he needed to go to hospital, so we did what we usually did when he wasn’t feeling well; put him to bed and kept him comfy.
“We had to collect some presents and Gareth went to check on him before we left.
“Bailey was in his bed and at that moment we could tell he had gone. It was very traumatic. CPR was attempted and the ambulance came, but there was nothing that could be done for him.
“His eyes were fixed, but he had a smile on his face. It was as if he had chosen his own moment to go.”
Gareth, 35, says the family went through the motions on Christmas Day for the sake of Bailey’s brothers, Roman, nine, and seven-month-old Freddie.
“We put Bailey’s presents out and we let his brothers and cousins choose something from the pile. We have kept some of the pieces, including a onesie and a pair of slippers which will be in his coffin.”
Amy says that the tragedy will not haunt future Christmases, adding: “From now on, Christmas Eve will be Bailey’s day and we will go on as normal on Christmas Day because that is what Bailey would want us to do.”
Bailey, who suffered epilepsy, spent the first 10 months of his life in hospital.
He also had major hip and leg surgery when he was young and was regularly affected by chest infections. Bailey also had curvature of the spine.
Amy, who was her son’s full-time carer, said: “He was stuck in a body that he should not have been in. We knew he wouldn’t have a long life, but we gave him everything we could to give him a fulfilled life.”
Amy and Gareth’s most cherished memory of Bailey was seeing him smile for the first time when he was two.
Gareth, who works at RAF Boulmer, said: “We were camping and we sat him outside in his pushchair. The sun broke through the trees and a big grin came across his face. He was mesmerised.
“That was the first time we saw any emotion from him and it was the first clue that he liked the outdoors.
“It was a milestone because we never expected it. It was like there would be a light at the end of the tunnel after he had been so poorly during the first few months of his life. It was very fulfilling for us.”
Amy and Gareth, who have thanked everyone for their messages of support, called Bailey their little jetsetter as he loved travelling and relaxing in the sun when he was abroad.
He also had a close bond with his brothers – especially Roman who doted on him and ‘grew up like Bailey’s little shadow’ – as well as his wider family.
While times may have been tough for plucky Bailey, he stayed strong and has been described as a charismatic character who made the most of everything that he did.
His parents want his funeral – at Alnwick’s St Paul’s Church tomorrow at 11.30am – to be a celebration of his life.
Amy said: “Bailey loved colours and lights, so we want people to wear something bright. The service is open to anybody who knew him, knew of him or was touched by him.
“We want to give him a really special send-off and he will be brought to the church in an Avengers-themed coffin – because he loved superheroes – in a horse-drawn carriage.
“We will play Happy, by Pharrell Williams, because that was Bailey’s character.”
The wake will take place at Alnwick Rugby Club, followed by a balloon release.
Bailey went to Alnwick’s Rainbow Day Nursery, before attending the Northern Counties School in Newcastle. His parents have thanked both for their support over the years.
Northern Counties headteacher Judith James said: “We will miss him. He was a happy, delightful, charismatic boy who had a big personality and huge character.
“He loved trampolining and hydrotherapy, but most importantly, he loved people.”
The school wants to create a woodland sculpture in its grounds to honour Bailey’s love for the outdoors, as well as purchasing another trampoline.
Donations at his funeral will go towards the cause, as well as the balloon release.