Father-to-be found out he has incurable motor neurone disease
he decided to see a private neurologist and pay for the additional tests that were required.
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, said: “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,
● Rob O’Hara, 34, from Runcorn was diagnosed with Motor Neurone Disease weeks before the birth of his first son Jenson. but some people live with it for many He added: “We hope that Rob, like years. some other MND sufferers, can live
Alison said doctors told Rob “there for a few more years from now. was nothing they could do” except to “We are, however, conscious of the prescribe him medication which reality of this horrible disease and should help to slow the progression of how it can take people from us so the disease. quickly. That’s why we need everyone
With the condition starting to affect to pull together so Rob can make the his speech, Rob is in the process of most out of his life. There really is no using voice recognition technology to time like today.” bank his voice on a computer so that Despite everything he’s going his son can still hear his voice when through, Alison said Rob “tries to be he can no longer talk anymore. in good spirits” and have the mindset
Having recently bought their “forever of “this is what I’m dealt with and home” in time for the arrival of we’ve got to deal with it”. their baby, Rob and Louise, who have She said: “We’re focusing on what been together since they were 14, are we can do and keep things as normal now faced with the prospect of having as possible. It’s amazing how much to adapt the property to meet Rob’s help people have offered. We have a needs as the disease progresses. very close family and friends network
To help support the family with which are also very supportive and these practical changes and cover the who we are truly grateful for. cost of any clinical trials, Rob’s cousin “The MND Association - there’s a Will Hayes has set up a Gofundme lot of support out there from them.” page. On July 22, the family will be holding
In a message on the fundraising a charity night at the Halton Royal page, Will described how a 15 minute British Legion and are requesting any appointment in April turned Rob and businesses who are able to donate Louise’s world upside down. raffle prizes to contact them.