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Wales Online
Wales Online
Derry Salter

'My brother isn’t famous but wants to leave behind a legacy after his life-limiting diagnosis'

A Cardiff man has opened up about the heart-breaking reality of his brother's motor neurone disease diagnosis. Richard Hopkins, 55, from Whitchurch, was diagnosed with aggressive MND on May 21 last year and was given sixth months to two years to live.

Motor neurone disease is a life-shortening condition that impacts the brain and nerves and currently has no cure. There is a one in 300 risk of getting MND in the UK. Richard's oldest brother Jeff, 66, said Richard first sought help after he dramatically lost weight: "It took him nearly six months to get a diagnosis. Richard is actually quite positive about it all though.”

On the anniversary of Richard’s diagnosis, Jeff is climbing the Three Peaks challenge in the Brecon Beacons along with family and friends to fundraise for the charity MND Association. “This whole idea is Richard’s. Quite frankly it is too late for him. But he wants to help fund research for this life-limiting illness. My brother isn’t someone famous but that doesn’t change the fact he has MND. He wants to leave behind a legacy and we want to fulfil Richard’s wishes,” said Jeff.

Read more: 'My mum started off with pins and needles - but her final diagnosis will be life-changing'

Three months after being diagnosed with MND, Richard moved into a care home. His brother said: “It was difficult finding Richard somewhere to live at first because his needs are so specific. It took a while. This whole ordeal has been very traumatic for the family. It has certainly been a learning curve.

“We knew very little about MND before Richard’s diagnosis. It’s only really been spoken about publicly in the last few years, take Doddie Weir for example. People don’t realise that MND affects everyone differently though. Richard can talk, his speech is absolutely fine. He can also walk but only very short distances.”

Richard, Jeff and Sophie the dog. (Jeff Hopkins)

Before his diagnosis, Richard enjoyed long walks with his 10-year-old dog Sophie. The day of his diagnosis is also Sophie’s birthday. Because Richard now depends on others for his care needs, Jeff and his wife look after Sophie but she frequently visits Richard during the day.

Richard is also a life-long Cardiff City fan but since his diagnosis, he’s been unable to attend any games. “Cardiff City actually invited Richard along to a game in the early stages of his diagnosis. Unfortunately he got really ill and couldn’t attend. I don’t think he would be able to go now,” said Jeff.

The family got the idea of climbing the Three Peaks from Richard’s older brother Mike, who is a keen mountaineer. Jeff and Richard’s mother, who is 87, wanted to attend the fundraiser to cut the ribbon at the start of the climb but will instead wait with Richard and Sophie.

“Richard would have loved to come up with us but he can’t leave his home for more than an hour. Instead we are going to be hosting an auction, raffle and quiz at Richard’s home so he can take part. Richard has a big circle of friends and they, and the care home, have been so supportive throughout this,” said Jeff.

“This fundraiser has been so important for Richard’s mental health. This event and a holiday we’re taking him on in May has given him something to look forward to.” All the money raised will be donated to the Cardiff branch of the MND Association as the family wanted to keep funding as local as possible. There are currently a small number of MND-based clinical trials in Wales.

Denise Davies, head of community fundraising at the MND Association, said: “Without the amazing support of people like Jeff, the MND Association simply would not be able to provide its vital support services, fund research to find a cure and campaign and raise awareness of MND. Together we are making a real difference for people affected by this devastating disease.”

So far, the JustGiving page has raised nearly £1,000. You can support the fundraiser here.

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