A BOURNEMOUTH man who was diagnosed with motor neurone disease a year ago, is fundraising for a better quality of life for himself and his family.
In June 2021, at the age of 36, James Smith was diagnosed with motor neurone disease.
Once a keen runner, he had previously completed a number of half marathons to raise money for the Motor Neurone Disease Association but he never thought he would suffer from the debilitating disease himself.
He said: “What started life as an innocent twitch in my arm has now slowly progressed into twitching in most of my upper body and now little to no strength in my arms and hands.
“The progressive nature of this disease will eventually lead to me having no muscle strength and even the ability to swallow and, last of all, to breathe.
“With no cure and little to no treatment available to help me, I have no choice but to research and find alternative medications from other countries.
“The medicines from these countries have promising results in slowing down the progression of MND, but as you can imagine, these come at a considerable cost.
“Still, I’m willing to try anything to help alleviate and prolong my life as much as I can with Carly, my wife and my three beautiful young children.”
James needs to make alterations to their family home as the disease affects his mobility.
He said: “We live in a typical two up two down terrace house in Bournemouth.
“My family and I are worried at the prospect of what lies in store for us in the future.
“We will need to make alterations to our house to allow for wheelchair access, a wet room and potentially add a downstairs extension for a 3rd bedroom.
“But like everything, this comes at a huge cost.
“On top of everything, after finding a job and career I love as a Barber, I now have to make the hard decision to cut back on work due to the weakness I struggle with daily.”
James would also like to raise awareness of the disease and emphasise the importance of putting government funding into research.
He said: “I sort of was in a bit of a denial really up until recently and I've sort of come to terms with it really and now I need some help to raise some money to help me and my family for the future.
“Unfortunately there's no help to the extent that I need to get to that point.”
In 2021 the government pledged at least £50 million for motor neurone disease (MND) related research to find a cure, however some campaigners say it has been a struggle to access the promised funding.
James said: “The monies, as far as I'm aware, haven't been released from the government.
“It's paramount that the monies need to be released for this market, for the research and for the disease.
“It is why I reluctantly ask for your help to make our lives a little bit easier.
“Any donations would be gratefully received and put to good use to help improve mine and my family's quality of life.”
To donate to James’s GoFundMe visit: https://www.gofundme.com/f/help-me-and-my-mnd?utm_medium=referral&utm_source=unknown&utm_campaign=comms_zlg8+help-me-and-my-mnd
To follow his story on Instagram visit: @justussmiths
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereLast Updated:
Report this comment Cancel