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Liverpool Echo
Liverpool Echo
National
Charlotte Hadfield & Olivia Williams

Dad couldn't pinch thumb and finger before terminal illness

Messages of support have flooded in for a dad who was diagnosed with a terminal illness.

Rob O'Hara, from Runcorn, was diagnosed with motor neurone disease (MND) which affects the brain and the nervous system and gradually gets worse over time. The 34-year-old was told he had the disease just weeks before the birth of his baby boy Jenson.

The dad noticed something was wrong when he couldn't 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.

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However, Rob noticed he started to experience the occasional slow speech and went to see a neurologists. After further tests, doctors confirmed the Rob had MND.

The 34-year-old recorded his voice so his baby boy can still hear him talk when the terminal illness robs him of his speech. Since the ECHO published Rob's story, dozens of people have sent in their messages of support and their own experiences of MND.

Writing on the ECHO Facebook page, Natalie Bridge said: "So sad and it's brave that he's thinking of ways to give his son memories of his voice." Nickie Jones added: "This is incredible and heart breaking but his boy always having his daddy's voice is amazing.

"Losing my grandad who was like my dad last year not hearing his voice is hard so I replay videos so many times just to hear bits of his voice and laugh."

Rob O'Hara and his baby boy Jenson who is five months old (Family handout)

Yvonne Hobbs-Imms also said: "So heartbreaking Such a sad and cruel disease. I nursed my best friend with this and became his voice, one wink for yes and two for no but through it all he smiled his way through giving the best fight he could. 12 years on and I'd do it all again in a heartbeat. Love and strength to him and his family."

Gary Robbo also said: "MND is a cruel life sentence for anybody. Make the best of your time Rob. All the best to you & your family."

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.

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.

Rob's mum Alison said: "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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