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Liverpool Echo
Liverpool Echo
National
Charlotte Hadfield

Dying dad records his voice so baby boy can still hear him talk

A dad has recorded his voice so his baby boy can still hear him talk when a terminal illness robs him of his speech.

Rob O'Hara, from Runcorn, was diagnosed with motor neurone disease (MND) just weeks before the birth of his baby boy Jenson. Rob, 34, first realised something was wrong when he lost the ability to pinch his thumb and index finger together anymore.

He initially suspected he was suffering from carpal tunnel syndrome - a common condition that causes tingling, numbness and pain in your hand and fingers. But after he started to experience occasional slow speech, Rob went to see a neurologist for further tests which confirmed he had MND.

READ MORE: Scenes from Liverpool’s streets now lost or rarely seen anymore

Rob's mum Alison, 57, told the ECHO in June : "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.

Rob O'Hara with his childhood sweetheart Louise and their baby boy Jenson (Family handout)

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.

Seven months on from his diagnosis in April, Rob is now struggling to walk due to the condition and needs the assistance of an electric wheelchair. He is now taking part in a clinical trial at the Walton Centre in Fazakerley.

Alison: "Rob is struggling with his speech. He's done some voice banking.

"He's got a computer that can talk for him. He doesn't tend to use that as much at the minute but obviously that time will come when he will use it more.

"I think it's good for the baby, so he can still hear his dad and it's good for us because we're not listening to a computerised voice, it's actually him."

Childhood sweethearts Rob and Louise had recently bought their "forever home" in time for the arrival of their baby Jenson, who is now five months old. Three companies - EBL, LK Architecture and ACS Property Improvements - are now in the process of adapting the property at a reduced cost and making it more accessible to meet Rob's needs.

Alison said: "These three companies have all got together and got things moving for us. I don't know what we're have done without them.

"We really do want to thank EBL for everything they've done, without them we wouldn't have known where to start."

Despite everything they are going through, Alison said Rob and Louise, 34, are "just getting on with it."

She added: "They're taking each day as it comes. We live in hope that one day there will be a cure."

On November 25, a comedy night will be held at the Halton British Legion, with all profits going towards Rob and Louise's home adaptations. A Gofundme page has also been set up to support the family at this time.

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