Despite everything he’s going through, “Rob is trying to have a good mood” and to have the mindset, “this is what I’m dealing with and we have to deal with it.”
Image: family handout)
An expectant father’s “world was turned upside down” after he was diagnosed with a terminal illness just weeks before the birth of his infant son.
Runcorn’s Rob O’Hara first realized something was wrong when he lost the ability to squeeze his thumb and forefinger together.
At first, the 33-year-old thought he had carpal tunnel syndrome, a common condition that causes tingling, numbness and pain in his fingers and hand.
However, he then occasionally began to speak slowly and was sent to a neurologist.
The coronavirus pandemic meant there was a backlog of NHS patients, so he paid to see someone privately and do the extra testing needed.
Rob was diagnosed with motor neuron disease (MND) in April this year, just weeks before his wife Louise gave birth to their first son, Jenson, on May 31.
His mother Alison, 57, said so Liverpool ECHO : “We are all devastated. You don’t expect that to happen. At first it was just a finger and a thumb, now he can’t lift anything with his left hand.
“He couldn’t lift a kettle or anything like that. He can use his right hand [but] he could not lift anything heavy. He can grab anything light with his right hand.”
Motor neuron disease is a rare and ultimately fatal condition that affects the brain and nervous system and gets worse over time.
There is no cure for MND and it can significantly shorten life expectancy, although some people live with it for many years.
Alison said doctors told Rob “there was nothing they could do” other than prescribe medication to help slow the progression of the disease.
As the condition begins to affect his speech, Rob is in the process of using speech recognition technology to record his voice on a computer so that his son can still hear his voice when he can’t speak.
After Rob and Louise, who have been together since they were 14, recently bought their forever home in time for the birth of their baby, they now face the prospect of having to adapt the property to Rob’s needs when the illness progresses .
To support the family with these practical changes and to cover the costs of clinical trials, Rob’s cousin Will Hayes has one 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 Rob, like some other MND sufferers, can live for a few more years.
“However, we are aware of the reality of this terrible disease and how it can take people from us so quickly. That’s why we all have to pull together so that Rob can make the most of his life. There’s really no time for that today.”
Despite everything he’s going through, Alison said Rob is “trying to be in a good mood” and have the attitude, “this is what I’m dealing with and we’ve got to deal with it.”
She said: “We’re focusing on what we can do and keeping things as normal as possible. It’s amazing how much help people have offered. We have a very close network of family and friends who are also very supportive and to whom we are truly grateful.
“The MND Association – there is a lot of support from them.”
On July 22nd the family will be hosting a charity night at the Halton Royal British Legion and is asking any businesses that can donate raffle prizes to get in touch.
To visit the Gofundme page or donate Click here.
https://www.mirror.co.uk/news/uk-news/dad-discovers-dying-after-losing-27213673 Father discovers he is dying after losing the footing in his left hand weeks before his son's birth