Family of young father from Biggleswade who lost his life to Motor Neurone Disease launch £10k fundraising campaign in his memory

'We will never give up and we won't stop fighting'

Thursday, 30th September 2021, 2:48 pm
Updated Thursday, 30th September 2021, 4:07 pm

The family of a young Biggleswade man who died from Motor Neurone Disease say they will "never give up" the fight to find a cure.

James Ellary, 23, had his life cut short by the condition, which is currently incurable, and bravely battled its progression through his diagnosis in January until his death in June.

The father-of-two's family is now determined to support scientific research so someone else doesn't suffer the same fate, and launched a fundraising page in James's memory, with a goal of £10,000.

James Ellary.

James's mother-in-law, Julia Adams, 43, said: "We started the page a couple of days after James died and we've been organising several things - the total now is just over £7,000.

"We are really really grateful for everyone's support, but in the grand scheme of things, more needs to be done.

"Motor Neurone Disease is incurable at the moment - there's no treatment. It will strip you of everything except your mind; you can't move, you can't communicate.

"Looking back now I realise how terrified James must have been.

The family are fundraising for charity.

"He was brave; it happened so fast. He was brave until the end."

James's family recently held a fundraising event at Henlow Pavilion with entertainment from 'The Soul Man', a big raffle, and an added auction.

The evening raised £2,174 and the family would like to thank local businesses who donated prizes for their "amazing support", and their kind friend who auctioned her prize (a stay at Henlow Bridge Lakes) to raise even more money.

Julia said: "It keeps us busy and gives us a focus. We're getting James's name out there. It isn't just about the money, it's about raising awareness and getting people to talk about it.

James Ellary; right: James's mum Cheri-an with his uncle, James Amos.

"When we first told people about James, they would say 'oh that's what Stephen Hawking had'. But he lived for years.

"Motor Neurone Disease has no boundaries - it doesn't care about your age, colour, sex, religion. It can happen to anybody.

"They are looking for medications to stabilise it at the moment. But the people getting diagnosed are younger and younger and so much more needs to be done."

Motor Neurone Disease affects the brain and nerves, causing weaknesses that get worse over time.

The condition caused James to lose all use of his arms and legs, and he relied on the use of a wheelchair or being lifted and moved by family.

He also had a feeding tube fitted.

Paying tribute in the Chronicle after James's death, his sister Charlotte Sale said: "James kept his sense of humour until his final days and would always put on a happy face when we saw him."

As well as the music evening, the family have been busy organising lots of activities, including a garage sale, while James's auntie held a cake sale that raised £610.

They also hope to organise a scavenger hunt in October for James's young children, Arthur and Athena, and a quiz next year, while Charlotte and James's uncle, Jake Amos, are planning sponsored half marathons.

Julia added: "Our target is to raise £10,000 by 25th January - James's birthday.

"What would he think of all this? He'd love it. Sometimes if I'm struggling I can hear him in the back of my mind, going 'Don't worry about it, don't worry'.

"He'd be really proud and pleased.

"One of my promises to James is that I would look after my daughter and his children and that we'd raise as much money as we could and get his name out there and that we'd try and stop it happening to someone else.

"We will never give up and we won't stop fighting."

James died on June 5 and was proud to marry his girlfriend Phoebe Carstairs at his home just two days before.

Now, Julia, Phoebe, James's mum Cheri-an Ellary, and his auntie Joanne Ellary are a four-strong fundraising team for the Motor Neurone Disease Association, organising events through the #rememberingJames page.

The family would like to thank the following local businesses for their support: Henlow Bridge Lakes, Just Vape and Juices, Natalie Stevenson Photography, John R Ford and Sons, TJ Plumbing, Will Brown Hair, La Roux Beauty, Best Hair Salon, Bangkok Lounge, The Railway Steamer Shefford, Arlesey Pharmacy, Sue Shephard, Ansell Village Stores, The Old Oak, Tesco (Clifton), Turkish Barbers, The Old Transporter Ale House, The Lemon Plaice, Greggs, MVI Corporate Merchandise, Shefford Building Supplies, the Manor Barbers, Dinky Ducks and Shefford Kebab House and Pizza.

Julia would also like to thank her close friends Anne and Graham for organising the raffle and delivering many letters to local business, and running the raffle on the evening, as well as Judith and Steve Hale who auctioned their Henlow Bridge Lakes stay and raising a further £470 on the night.