Mum leads tributes to 'Sunderland legend' Leon Hetherington following his death aged 36

Leon Hetherington, from Pennywell, baffled medics until he was diagnosed with a rare form of muscular dystrophy aged three.

But with the help of his family and huge group of friends, the condition did not define him.

He ran a number of businesses, holidayed abroad often and took every chance to enjoy a party, while he always ensured his mates and relatives had someone to listen to their troubles.

It is hoped his friends and family can gather for a graveside burial at Bishopwearmouth Cemetery on Monday, January 4, to celebrate his life.

The Chumbawamba hit Tubthumping will be played, a song he loved after defying doctors’ expectations he would not walk again following an op to straighten his spine aged 13.

His mum Karen, 57, said: "He was the life and soul of everything he did.

“He had such a fantastic group of friends and everybody who met him became his friend.

"I know he’s my son, but people always said he was a Sunderland legend.

"I’ve had so many messages and one even said: ‘Are you even from Sunderland if you’ve not had your photo taken with Leon?’

"We had Leon for 36 years and he was just absolutely fantastic, I will never stop loving him, and as much as I would love him to still be here, the pain was intolerable.

"He talked to a lot of other people with muscular dystrophy on Instagram and Facebook and helped lots of others.

"But his life wasn’t just about his disability, we wanted him to live as normally as he could and that is what he has done.”

Leon, who was a devoted dad to his 13-year-old daughter, also leaves Karen’s partner Tex Fontaine, 60, his dad Gary, 57, and Gary’s partner Bernice Guyan, 49.

He was also a brother to Jade, 34, Cassie Purvis, Jack Purvis, both 29, and Caley, 29, and Harley, 17, who live in London near their dad, as well as grandparents Audrey and Mick Hetherington.

His mum was given help as his carer by Leon’s friend Kirk Maddison, with a host of other pals also helping the family.

Leon’s working life began with Pennywell Enterprise Centre, where he was an admin and IT assistant.

He went on to run LH Motors, buying and selling used cars, and ran the Wheelie Clean Bins service with Stephen Purnell and David Hodgson, driving the van as they helped wash the containers.

In 2009, he and Karen, with help from Cassie, launched House of Flowers florist in Washington Village, but as Leon’s condition worsened, they decided to sell up.

Sports mad, he loved meeting professionals and also enjoyed nights and mornings out at the New Monkey club, with his friends looking after him as they enjoyed breaks and stag dos abroad.

He was supported by St Benedict’s Hospice, where he died on Friday, December 18, with a fund set up in his honour to boost its funds.

His funeral will be at 2.30pm on Monday and people are asked to keep to social distancing rules and to wear clothes they are comfortable in or Sunderland colours, as Leon was a devoted Black Cats fan.

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