Amazing Life

By Jess Grieveson-Smith

 

A little girl’s teddy bear is travelling the world in order to fulfil the dreams his owner no longer can.

Emma Bailey, 41, from Poole, Dorset, sent the bear on a quest to raise awareness of mitochondrial disease – by asking strangers to help complete her late daughter’s bucket list.

And now Emma’s being able to tick off one of eight-year-old Amber’s ultimate wishes – by attending the London premiere of the sequel to Amber’s favourite film, Frozen with Mr Mito Bear – and the teddy has even met the film’s characters in DisneyWorld, Florida.

Little Amber Bailey sadly passed away in April this year after being diagnosed with life limiting Leigh Syndrome, part of the family of mitochondrial diseases – and her mum is determined that Mr Mito Bear will continue to complete her bucket list.

 

Emma’s determined that more people will become aware of Leigh Syndrome – characterised by progressive deterioration including generalized weakness, lack of muscle tone, clumsiness, tremors, muscle spasms that result in slow, stiff movements of the legs as well as the deterioration of the respiratory system.

Most diagnosed will not live past their teenage years, with Amber beginning to deteriorate shortly after her eighth birthday.

Emma said, “The one thing that would cheer her up, throughout this horrific diagnosis would be singing Frozen songs.

“So it was bittersweet when they announced the sequel – and I know Amber will never be able to see it.

“She always used to sing along until the disease robbed her of the ability.

“Yet since that, we’ve had people who are offering to take Mr Mito Bear to Disney World, Florida.

“Seeing those photos were so bittersweet – Amber would have been beside herself with happiness.

“I can’t even imagine how much Amber would have loved it – she was a people’s person, and all these people who are involved now – she’d think of them all as new friends.

“Getting to go to the premiere was beyond emotional – the movie made me laugh because all I could think was how much Amber would have enjoyed it.”

Wearing a little t-shirt to explain his mission, Mr Mito Bear hasn’t just stopped at Disney – he’s travelled to the highest point in the Algarve, Portugal, got his pilot’s license on the way to Spain, and enjoyed beekeeping in Somerset – but he’s got plenty left on his list – with trips to the US and down under planned too.

 

Emma further addded, “I was missing Amber and thinking how best I could honour her memory.

“She was born in 2011, and was diagnosed in 2014.

“The condition leads to a progressive loss of mental and movement abilities.

“In a lot of cases, the brain stops the respiratory system – which is what happened with Amber.

“I wanted something that would reflect Amber’s love for life, and help spread awareness.

“So I set up a Facebook page, and asked for the help of others who might have children with the disease, or who also have mito angels.

“To get her bear travelling, spreading the word in the hope more people will know what the disease is.

“I never anticipated the response it would get.”

And Amber’s bear has taken off at lightening speed, with a list of places to visit – including entirely different continents.

Emma added, “Mr Bear has a list for Canada, for the US, for Australia and even Holland.

“It amazes me – Amber was my world, but she was my daughter.

“The fact that anyone else wants to help spread awareness of mitochondrial disease and keep Amber’s memory going is so touching.

“I always knew that her condition was life-limiting, and knowing time was limited, I was determined to make it count.

“She adored life, always happy and bubbly.

“Her older brother Aaron, 13, loved their hugs and he misses them so much.

“She made the most of the life she had.

“She loved everything and everyone and was always asking others how they were, even when she was poorly and coming round from a seizure.”

“People have even started painting rocks and hiding them, like a game – because that’s something Amber would love.

“She loved her arts and crafts, and people so this is perfect for her.”

Amber and her family were supported by the Lily Foundation who can be found here; https://www.thelilyfoundation.org.uk/ and Mr Mito Bear can be found on Instagram at @MrMitoBear  or on Facebook at https://m.facebook.com/MrMitoBear/