Serving up fundraising for Hugo at Rasen coffee shop

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  • ‘Devastating’ diagnosis spurs on fundraising and awareness of Duchenne’s

A Market Rasen woman has helped launch a fundraising appeal after her grandson was diagnosed with a life-limiting condition.

Maxine Darby says she was left ‘devastated’ when four-year-old Hugo was diagnosed with Duchenne Muscular Dystrophy.

“I just burst in to tears when I heard the news,” said Maxine.

“You always think ‘it’s not going to happen to us’ but it has and I want to do everything I can to support him.”

Duchenne Muscular Dystrophy is a recessive form of muscular dystrophy, affecting around 1 in 3,600 boys.

It results in muscle degeneration and premature death.

Hugo lives in Lincoln with mum Katie, Maxine’s daughter, dad Danny and brothers, Riley (5) and Jasper (2).

Both his brothers have been tested for Duchenne’s and they do not have the condition.

Doctors have said Hugo could be in a wheelchair by the age of 10, or even earlier.

“I want to give all the support I can to all the family,” said Maxine.

“It is a life changing thing for them as a family and our wider family.

“It is a lot to take in.

“When you know what the outcome is and what to expect, it is just such a shock.

“We know there is no cure but with medical advances things could change.

“We just have to hope that that happens.

Now the family has set themselves a fundraising target of £10,000 to support Hugo and to raise awareness of the condition.

Maxine added: “I knew nothing about this condition until Hugo was diagnosed, so we want to make people aware.

“We also want to give Hugo the best life he possibly can have and we are looking at possible treatments abroad at the moment to keep him mobile longer.”

As well as the GoFund Me page, which now stands at just under £8,000, a number of events are planned for the Help4Hugo campaign.

Hugo’s dad Danny is a teaching assistant at Kisimul School near Market Rasen and his colleagues are doing sponsored slims, as well as taking part in a charity football match on July 23, when there will also be a bouncy castle, a visit from Peppa Pig and a barbecue.

A Valentine’s Ball and 80s/90s party night are planned for next year in Lincoln.

Closer to home, Gellars cafe in Market Rasen’s Queen Street is raffling a luxury hamper, packed full of items donated by their generous customers.

“Every little helps and I am really grateful for the kindness of staff and customers, especially Mike and Jan,” said Maxine.

“The hamper is growing every day - all through the generosity of customers and a lot of tickets have been sold too.

“Since we have had the diagnosis, people have been so good.

“We really can’t thank people enough for what they are doing.”

To find out more about the Help4Hugo campaign and events taking place, go to the dedicated page on Facebook.