A South Belfast woman, who lives with a rare muscle-wasting illness, is urging people to support a Christmas event for the charity that supports her and others with the condition.
Claire Boylan, 39, was first diagnosed with Miyoshi Myopathy in her late teens, which causes progressive muscle weakness and affects her feet, ankles and calf muscles.
She is one of only three people in Northern Ireland with this particular condition.
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More than 110,000 children and adults in the UK have a muscle-wasting condition, which can cause muscles to weaken and waste over time, leading to increasingly severe disability. Some affect the heart and muscles vital for breathing, cutting lives short.
Muscle-wasting conditions may be inherited or strike out of the blue. There is currently no cure, but research to develop potential treatments is showing great promise.
Claire previously told Belfast Live: "In the last eight years I have had to retire from my job with Belfast City Council on medical grounds and then I began to volunteer with Muscular Dystrophy UK in Northern Ireland to raise awareness as there is still a huge lack of knowledge about muscle-wasting conditions like mine."
The charity is hosting a magical night of festive music at Stormont to raise funds for the muscle-wasting charity.
People in Belfast are invited to start the Christmas season in style, at an evening of uplifting performances and festive cheer taking place at the iconic Parliament Buildings on Saturday, December 3.
The annual Christmas concert, organised by the MDUK’s Northern Ireland Council, has become a firm favourite to kick off the festive season.
This year it will be hosted by Cool FM presenter and DJ Evanna Maxted and features a stellar line-up bursting with musical talent, including Andrea Begley, winner of The Voice UK 2013 and singer-songwriter and MDUK’s ambassador, Daisie Conway, who rose to internet fame during lockdown.
There will also be performances from the Antrim Country Choir and the Belfast and Lisburn Rock Choir, to mention just a few.
Claire added: “The Spirit of Christmas always feels like the start of the festive season and it’s a wonderful way to get into the Christmas spirit – a night of uplifting music in such iconic surroundings.
“It’s truly joyful, with so many talented people giving their time to help us raise awareness and raise funds for people living with muscle-wasting conditions.”
This year, centre stage will be 11-year-old Luke O’Hanlon, from Dungannon, who will light a candle of hope at the concert.
Luke was diagnosed in 2012 (aged 13 months) with Duchenne muscular dystrophy and is well-known in his local community for his heroic fundraising and campaigning efforts, along with his mum Claire, who chairs MDUK’s Northern Irish Council.
Luke and his family are hoping the concert, being held in the Great Hall of Belfast’s iconic building, will attract over 100 people and bring in a record amount.
This year’s event is being held in memory of Arryn Widd, 23, who had Duchenne muscular dystrophy, and passed away earlier this year.
Doors open at 6pm with the performances to start promptly at 6.30pm.
For those who can’t attend in person, but don’t want to miss out, the concert will also be livestreamed through MDUK’s Facebook page.
The money raised from the event will go towards helping scientists find treatments and cures, as well as providing essential support to the 110,000 people across the UK living with muscle-wasting conditions.
To find out more about the Spirit of Christmas event and to book your tickets, click here.
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