Published: 05:00, 04 May 2022
| Updated: 16:05, 04 May 2022
A dad with Motor Neurone Disease (MND) has spoken out and started a bucket list to help raise funds for charity and inspire others.
Doctors confirmed the diagnosis to Sam Hayden-Harler, from Crockenhill, on March 5 after months of tests and appointments.
Sam Hayden-Harler shares his MND diagnosis as he launches his bucket list fundraiser.
The 35-year-old said he "zoned out" when told and his immediate feeling was that "life would end tomorrow".
After getting married to husband James a few years back and adopting a four-year-old son together, he said he felt like he had only just started living life.
But following his diagnosis he felt this was being cruelly ripped away and "life was over".
Sam said: "I was off on adoption leave and what alerted me is I returned to work in February 2021 and by March suddenly my wrist felt really sore but I put it down to being at my desk and probable carpal tunnel.
"Some days it would really ache and by May I knew something was not right."
After consulting a doctor who didn't originally detect any neurological problems Sam arranged to see a physio.
The dad said he was on "tenterhooks" the whole time and was asked to carry out what then appeared to be a series of strange tests, including walking on his tip toes and whistling.
Eventually, after numerous blood tests, Sam was referred for an MRI scan which confirmed his diagnosis.
MND is a terminal, rapidly progressing neurological disease which attacks the body's nerves causing muscles to no longer work.
Over the course of their illness most people with MND will be trapped in a failing body, unable to move, talk, swallow and, ultimately, breathe.
Sam said: "That was it. In my head life was over, I was putting myself in a box.
"I remember sitting there and thinking 'oh, is this my last Christmas?'
"It is horrible, especially someone so young which is why I don't want to shut up about it.
"You would not look at me and think I had a terminal illness."
Sam and husband James married in 2016, exactly three years to the day since they met, and for a short time ran a wedding planning business called Ever Ever After.
The pair also set up YouTube channel "Daddy, dad and me" to vlog their experiences as gay adopters with their son who they call "Little Man".
But after struggling to find ways to tell his wider family and friends, Sam took to the channel to share his diagnosis.
He says this was the easier thing to do "rather than heartbreakingly having to recall and share" each time.
Sam has also published details of his bucket list online which includes everything from a night at The Proms to appearing as an extra on TV and eating a battered Mars bar.
The dad, who works for a loss adjusters, does not know exactly how quickly his condition will progress and so is eager to make the most of the time he has left.
He said: "I know I'm going to be wheelchair bound, perhaps not able to eat or speak, which is why I'm doing so much now because you don't know when that is going to be taken away from you.
"Little Man does not know what is going on but I want him to look back and say 'that is my dad'."
Sam is keen to maintain a sense of normality but hopes by speaking out he can help "normalise the conversation" and show MND is not an "older generation" illness.
Over the last two months he has been fundraising via a GoFundMe page which has surpassed £6,000.
The blogger says he was overwhelmed by the response to the fundraiser set up to assist him and his family.
"I think at times you can very easily feel like people are out for themselves but this just shows it is anything but," he said.
"The generosity and the support has just been mindblowing. I never expected it just by being open about my diagnosis."
Another of his bucket list goals is to raise £50,000 for the Motor Neurone Disease Association (MNDA), which relies on voluntary fundraising.
Together with a friend he is planning a charity gala which is being held at The Alexandra Suite, Swanley, on Friday, August 19, with all proceeds going towards the MNDA.
There is no cure for MND and there are about 5,000 people living with the condition in the UK.
In November, the government pledged at least £50 million in funding for MND research as part of a wider £375m investment into combating neurodegenerative disease.
But campaigners have expressed concerns amid reports funding is being stalled by "red tape" with scientists being told they must submit multiple applications for small allocation chunks.
"Sadly, it was recently reported that the government has not honoured their promise of £50m funding over five years, which makes it even more important that we have these events," said Sam.
"The MNDA receives little funding and this is why I want to speak openly about it to raise awareness."
A Department of Health and Social Care spokesman said: “We have invested millions of pounds on research – which led to major advances in how the disease is understood – and remain committed to spending at least another £50m to help find a cure.
“Research funding is available now and researchers can apply to the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI).
“We will support the motor neurone disease research community in making these applications and fully understand how important it is for funding to be allocated as soon as possible so even more progress can be made.”
To donate to the GoFundMe fundraiser click here. Tickets for the gala are available to buy for £70. For more, email firstname.lastname@example.org.