‘I want to live my life before the inevitable’
A29-YEAR-OLD broke into “floods of tears” after he received a devastating diagnosis leaving him just years left to live.
Rob Barrie first suspected something wasn’t right during an archery session in August 2016 when he started to notice “some weakness” in his right arm, along with frequent muscle spasms in the same arm and both legs.
Around the same time, he also started to notice he was having difficulty in lifting his legs up properly and often stumbling and falling over.
Rob, from Runcorn, who aspired to study IT and computing with a dream of becoming a video games programmer, booked an appointment with his GP and set off on a 10-month-long journey of tests to identify what was causing the “alarming symptoms”.
Rob said: “I went through many different tests to try and determine what was causing these alarming symptoms. Not knowing that soon my life was about to become a literal nightmare of constant battles, just to try and get through everyday things.
“After different consultations with various doctors and neurologists, in June 2017 I was made an appointment at my local hospital to see a neurologist I had met previously.
“I attended the appointment with my mum and stepdad.”
The doctor handed Rob and his family the devastating news he had Motor Neurone Disease.
Rob, who was diagnosed with schizophrenia at age 14, said: “I was given a life expectancy of just two to five years. At first, I couldn’t process what had just been said, neither could my mum or my stepdad. Then the emotion set in.
“Floods of tears surged down each of our faces as reality sunk in. We were left crushed and broken by the devastating diagnosis.
“All my dreams ended abruptly, the archery coaching career I once thought I could have, gone. The university degree I wanted, that too gone. Even my hopes of having a relationship and children had gone.”
Rob’s symptoms continued to worsen from here and he now is fully dependent on family, carers and a full-time wheelchair to get him through the day.
He added: “Eating, speaking and breathing is difficult and tires me out. I’m reliant on a ventilator at night to help me breathe and an assistive communication device to aid me in speaking.
“It hurts me to see the heartache this cruel disease has on my family and friends. Seeing me suffer and struggle is definitely so hard for them.”
After shielding throughout the pandemic, Rob now wants to fulfil his final few years by ticking things off his bucket list.
Setting up a GoFundMe page, Rob hopes he can raise the funds that will allow him to travel abroad for the first time and fly to America to watch his favourite ice hockey team, The Pittsburgh Penguins.
In a message on his fundraising page, Rob said: “I am trying to raise money to help me to live my life some more and do something that I’ve never done before.
“I want to live my life before the inevitable happens.”