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Liverpool Echo
Liverpool Echo
National
James McNeill

Mum knew 'something was not right' after son couldn't move hand

A mum has spoken of the "heartbreaking" moment she found out her son had a terminal illness.

Robert Barrie was only 24 when he was diagnosed with Motor Neurone Disease. His mum Lynn said her son had become unsteady on his feet but at the time thought nothing of it.

However, one day when Rob was unable to move the fingers in his right hand she knew "something was not right". Lynn said that it was like getting a "knife to the heart" when the neurologist told the family her son had MND.

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Speaking to the ECHO Lynn said: "In the beginning, he was not walking properly and was unsteady on his feet. We just thought he was tired.

"Then he could not lift his hand and it went from there. After the doctor's visit, I was totally blown away and could not believe it.

"I felt like I was going to be sick and we went from a normal life, with my son getting older and going to university to an influx of different professionals. He had a speech therapist and had a feeding tube put in even though he was still eating normally and I did not understand any of it.

"This was all happening while Rob was still able-bodied but they all knew what was coming and we didn't."

MND kills a third of those diagnosed within 12 months and Rob now 29 has been battling the disease for the past five years. Permanently in a wheelchair, Rob has also lost the use of his hands.

Lynn who is from Runcorn said: "I can't put into words how devastating it was your life is not the same and it destroyed our lives. It is all I think about and it is the last thing on my mind when I go to sleep. I wish I could change it back to the way things were and everyday things deteriorate and problems get worse."

Rob with his dog Buddy (Robert Barrie)

However, Lynn said Rob wakes up "every day with a smile on his face" and "never thinks about himself". She said: "He always asks and worries about everybody else and makes sure they are okay. He never moans and complains or tells anyone if he is struggling he is an unbelievable person."

Robs dream is to see his favourite ice hockey team the Pittsburg Penguins in action. He is now planning a trip to America with his two carers but Lynn said she is not invited as she would "cramp his style".

His family did a sponsored walk from Southport to Liverpool to raise funds for the trip. If you would like to donate to the Just Giving page more information can be found here.

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