Watch: Northern Ireland man with progressive muscle wasting disease Duchenne Muscular Dystrophy appeals for help to secure holiday home for families who 'really need a break'

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A Northern Ireland man, 31, with Duchenne Muscular Dystrophy – a progressive muscle wasting disease that affects skeletal muscles as well as the heart and lungs – has started a GoFund Me to help families like his own recharge their batteries.

The GoFundMe by Richard Douglas – who is limited physically with his condition but remains very competent mentally – says: “I was diagnosed at the age of 3 and since then have progressively lost the ability to move my body.

"This means I am unable to do everyday tasks like eating, showering and controlling my wheelchair without the help of my carers.

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"It also means I have complex medical needs which need monitoring 24/7 and I have been completely ventilator dependant for the last five years.”

He adds that “there are many people who like me have additional needs and are unable to walk” meaning they need “additional specialised equipment” to help them get through the day.

This equipment could include a hospital type bed, air flow mattresses, specialised supportive shower chairs and a hoist which allows us to be transferred from a wheelchair into bed or the bathroom.

He added that the reason for his appeal is because “currently there is no seaside holiday accommodation in Northern Ireland that provides this equipment in their accessible rooms” which means that people like Richard “cannot have a vacation with their family, friends and carers in Northern Ireland”.

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He added that whilst he has been able to enjoy short holidays in Donegal, there is nothing similar in Northern Ireland

Richard Douglas at a concert with his mumRichard Douglas at a concert with his mum
Richard Douglas at a concert with his mum

"On the way home I became increasingly frustrated that due to lack of facilities people with complex needs can’t experience a holiday like this in Northern Ireland and cannot experience a few days away from home,” he said in the appeal.

"Many disabled people with complex needs want to live as full a life as possible with their, family, friends, and caregivers.

"Hoist Assisted Holidays, hopes to be able to give this opportunity to the disabled people of Northern Ireland.

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"My goal is to raise money to kickstart our non- profit company, Hoist Assisted Holidays.

A younger picture of Richard DouglasA younger picture of Richard Douglas
A younger picture of Richard Douglas

"What we are looking to create is a seaside accommodation in a bespoke lodge that can offer all of these things in a beautiful location and allow disabled people and their loved ones to have a holiday that they deserve.

"It will be located at Atlantic View Caravan Park in Ballycastle and will have stunning views of Rathlin Island and the Atlantic Ocean.

"It’s hard to ask you to imagine what’s it’s like to live in my shoes as at times it’s so very different from your own life.

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“I hope that through this small glimpse into my life you can see what it’s like to live with complex needs and that a simple thing you might take for granted like a holiday can really be very difficult for someone like me.”

Richard DouglasRichard Douglas
Richard Douglas

And in recent weeks, Richard set himself a new challenge – 'Raise Your Voice for Duchenne'.

Explaining his life-limiting condition, Richard says: ‘My name is Richard. I’m the founder of Hoist Assisted Holidays.

‘I have Duchenne Muscular Dystrophy, a progressive muscle wasting disease for which there is currently no cure.

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‘I‘m 31 years old and am completely paralysed and have been ventilator dependent for the last 7 years/

‘The theme of this year‘s World Duchenne Awareness Day is 'Raise Your Voice for Duchenne'. This year's theme emphasises the importance of creating a society with equal opportunities for all.’

In the appeal he reiterates his call for the public to help him set up ‘the first specialised accessible holiday lodge in NI for people who have life limiting or terminal illnesses who rely on specialist equipment such as hoists , profiling beds, supportive shower chairs , changing benches and more to meet their care needs’.

He adds: ‘This will hive those who have the most complex care needs and their families an opportunity for the first tome locally to have a few days away in accommodation equipped to meet their needs.

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"This years theme has inspired me to take up a challenge of rolling 7.9 km a day for 10 days.

"As I have complex health needs that need to be carefully monitored and managed this will be a tough challenge but one that I’m looking forward to taking up.

"I’ve chosen to do 7.9 km a day as it connects with Duchenne Awareness Day falling on the 7 day of the 9 month in recognition of the 79 exons on the dystrophin gene which can cause Duchenne Muscular Dystrophy if there is a small genetic fault in one of them.

"I would really appreciate if you can support me as I take up the challenge Your donation will be very much appreciated.”

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