A new dad given a devastating diagnosis weeks after the birth of his son is now 'trapped in his own body' after initially thinking he had a common hand injury.
Rob O'Hara first realised something was wrong when he lost the ability to pinch his thumb and index finger together.
After struggling to make a cup of tea, the 33-year-old from Runcorn, Cheshire, decided to book an appointment with his doctor.
His life was then about be turned upside down after being told he had motor neurone disease just weeks before adorable Jenson arrived.
He suspected he was suffering from carpal tunnel syndrome - a common condition that causes tingling, numbness and pain in your hand and fingers, the LiverpoolEcho reports.
But after he started to experience occasional slow speech, Rob went to see a neurologist for further tests which confirmed he had MND.
Motor neurone disease is a rare and ultimately fatal disease that affects the brain and the nervous system and gradually gets worse over time. There's no cure and it can significantly shorten life expectancy but some people live with it for many years.
Rob's mum Alison, 57, said at the time: "We're all just devastated. You don't expect anything like this to happen. When it first started it was just a finger and a thumb, now he can't lift anything at all with his left hand.
"He couldn't lift a kettle or anything like that. He can use his right hand [but] he couldn't pick anything heavy up. Anything light he can grip it in his right hand."
Today Rob is unable to walk without the assistance of a wheelchair. He now uses a computer to help him communicate and has recently been given a wheelchair accessible vehicle so he can go out with his family.
Rob's friends and family are determined to continue raising awareness of motor neurone disease and the devastating impact it can have. Friend Ian Goldsmith, 35, ran a minimum of 10km a day throughout May, dressed in an orange tutu in a bid to raise awareness.
Ian's fundraising efforts also include running across 15 peaks in Snowdonia in just over 11 hours as part of the Welsh 3000 challenge and completing the Yorkshire Three Peaks challenge in just 6 hours and 40 minutes.
All money raised via a Gofundme page will go towards supporting Rob and his family, including with the cost of home adaptations, private healthcare and travel.
Alison said: "It's like getting trapped in your own body. It's like your mind works perfectly well but your body doesn't work.
"He got diagnosed in April last year. Within 12 months he's deteriorated quite rapidly really in terms of his walking and speech."
Despite everything's he's going through, Alison said Rob has a smile on his face and has "got a good sense of humour." She added: "He's a bit of a joker at times."
The family are set to climb Snowdon on Saturday 17 June, before Ian completes the Race to the Stones ultramarathon in July.
Ian's fiancé Sarah Perraton, 35, said: "Rob was only 34 when he was diagnosed - it seems so cruel and unfair. He's such a good person, looking after himself as well.
"Ian felt a bit useless so he felt at least this is one thing he could personally do."
The family will also hold a fundraising night on July 21 at the Halton British Legion which anyone is welcome to attend. To visit or donate to the Gofundme page click here.
