A dad-to-be had his "world turned upside down" after being told he had a terminal disease weeks before the birth of his baby boy.
Rob O'Hara, from Runcorn, first realised something was wrong when he lost the ability to pinch his thumb and index finger together anymore. The 33-year-old initially suspected he was suffering from carpal tunnel syndrome - a common condition that causes tingling, numbness and pain in your hand and fingers.
But when he started to experience occasional slow speech, Rob was referred to see a neurologist for further tests. Due to a backlog of NHS patients caused by the coronavirus pandemic, he decided to see a private neurologist and pay for the additional tests that were required.
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In April this year, Rob was diagnosed with motor neurone disease, just weeks before his wife Louise gave birth to their first son Jenson on May 31. His mum Alison, 57, told the ECHO: "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."
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 for MND, and it can significantly shorten life expectancy, but some people live with it for many years.
Alison said doctors told Rob "there was nothing they could do" except to prescribe him medication which should help to slow the progression of the disease down. With the condition starting to affect his speech, Rob is in the process of using voice recognition technology to bank his voice on a computer so that his son can still hear his voice when he can no longer talk anymore.
Having recently bought their "forever home" in time for the arrival of their baby, Rob and Louise, who have been together since they were 14, are now faced with the prospect of having to adapt the property to meet Rob's needs as the disease progresses. To help support the family with these practical changes and cover the cost of any clinical trials, Rob's cousin Will Hayes has set up a Gofundme page.
In a message on the fundraising page, Will described how a 15 minute appointment in April turned Rob and Louise's world upside down. He added: "We hope that Rob, like some other MND sufferers, can live for a few more years from now.
"We are, however, conscious of the reality of this horrible disease and how it can take people from us so quickly. That’s why we need everyone to pull together so Rob can make the most out of his life. There really is no time like today."
Despite everything he's going through, Alison said Rob "tries to be in good spirits" and have the mindset of "this is what I'm dealt with and we've got to deal with it."
She said: We're focusing on what we can do and keep things as normal as possible. It's amazing how much help people have offered. We have a very close family and friends network which are also very supportive and who we are truly grateful for.
"The MND Association - there's a lot of support out there from them."
On July 22, the family will be holding a charity night at the Halton Royal British Legion and are requesting any businesses who are able to donate raffle prizes to contact them.
To visit or donate to the Gofundme page click here.
