AFTER being diagnosed with Motor Neurone Disease in 2019 and being told he had three years to live, one Bournemouth man has demonstrated he will “go above and beyond to survive”.
On his wedding day in 2016 Seb Bousie’s family noticed his speech was slurred, something he put down at the time to being “very slightly intoxicated, both in love, and yes, alcohol”.
However, his speech never recovered and Seb quickly developed mild vertigo that subsequently led to a complete loss of balance.
At the age of just 32, Seb was diagnosed with Motor Neurone Disease and his neurologist gave him a prognosis of three years in 2019.
“Motor Neurone Disease is a horrific condition to live with, not only for me but my wife and our family and friends,” said Seb.
“It's cost my wife and I our dreams of owning our own home, having children and both of our careers.
“Motor Neurone Disease is a relentlessly progressive disease and almost everyday I notice things that I can no longer do.
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“It's incredibly challenging both physically and mentally to wake up each day, which could be your last, and put a smile on your face.”
In his own words, Seb has completely ‘smashed’ his prognosis and is determined to survive, though the disease is fatal - often within five years.
“This disease is 100 per cent fatal, often within 5 years. I have already demonstrated that I will go above and beyond to survive," he said.
Seb who is no longer able to speak, is raising money for treatments and to help ensure his quality of life and dignity as his symptoms progress.
He said: “I dont have the funding like celebrities do fighting this disease, I come from humble surroundings and I’m just trying to survive.”
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At the age of six Seb got his first computer and began coding - after leaving school and obtaining his degree and masters the 35-year-old went on to work in the pharmaceutical, aerospace and consultancy industries.
Now he uses his extensive IT experience to help the Scott Morgan Foundation to support people with extreme disability not to only live with Motor Neurone Disease, but to thrive.
'The only alternative is certain death'
Seb is convinced that the treatments he has researched and sourced internationally along with a positive mindset, including support from the people around him, has caused his progression to slow.
However, there are very limited treatment options available in the UK for Motor Neurone Disease.
"The UK does not appear to making progress to better treatments or that fundamental cure, but USA, Japan and Australia are making leaps and bounds in the Clinical Trials.
"I am hoping to raise as much as possible to continually fund these alternative medications and private treatments as well as improve the quality of my life with the disease.
"I am a dying man, why shouldn't I be allowed to try medications that may potentially help me live longer?
"Certain death is the only alternative."
Visit www.sebsfightwithmnd.co.uk to find out more about Seb's fight with Motor Neurone Disease and to donate.
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