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As one of just 65 people in Northern Ireland with a rare, life-limiting condition, Adam Stevenson’s parents know that his life will be short.
But the East Belfast family is determined to make his days memorable.
This weekend he will visit his heroes at Rangers FC after the community came together to raise the money.
The 14-year-old from the Belvoir estate has Duchenne Muscular Dystrophy, a muscle-wasting condition that limits his life expectancy to his mid-20s.
Dad Gary, 53, told Belfast Live: “We found out he had it back in 2009. Adam kept falling over. So we took him to the hospital, they ran a lot of tests and they came back with long faces. They told us he’d Duchenne Muscular Dystrophy. We said, ‘OK, well how do we deal with that?’.ADVERTISING
“They told us there was no cure for it, his life expectancy is in his mid-20s. We just fell apart, we couldn’t understand. The life-expectancy just took us apart.”
Adam, who is wheelchair-bound, lives with his younger brother Jake, 12, mum Beverley, 48, and dad Gary, 53.
He is especially close with Jake.
Gary added: “They’re right close to each other. If Adam drops anything he would go in and lift it for him.
“They love each other – and fight like normal brothers.
“Jake knows that it’s got worse – but he said, ‘Dad, I’ll do everything I can to help’.”
Adam’s condition continues to get worse and his family is determined to fulfill a number of his dreams.
Gary said: “It’s getting worse every day. All his muscles are dying. His heart is dying. There is no cure and there is nothing we can do – we’re just at our wit’s end.
“We know the next 10 years aren’t going to be nice.
“He has some dreams for his life. He wanted to go see Rangers, he wanted to go see Chelsea and he wanted to have a cruise.”
The family was approached by Jim Wilson from R.E.A.C.H and the wheels were put in motion for a dream trip to see Rangers v Kilmarnock on Saturday.
Gary added: “Up to two weeks ago, we knew nothing. A family member was approached by Jim Wilson who asked if there was anything he could do.
“Jim got all the community involved and he has made one of his dreams come true.
“The clubs throughout East Belfast that have helped are brilliant – it’s come as such a big surprise.
“To get to see Rangers, to meet the players – it’s like Christmas Eve. We can’t thank enough those who have been involved in making this happen.
“His excitement is beyond words, he’s overwhelmed and we’re so happy that we have this opportunity.
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“This is the best thing that has ever helped Adam, he’s just on cloud nine.”
Donations towards the trip came from R.E.A.C.H, East Belfast Action for Community Transformation (ACT), Rangers supporters clubs from HW Welders, East Belfast Constitutional Club and Lagan Village along with the Union Jack Shop and East Belfast Protestant Boys Flute Band.
R.E.A.C.H Chairman Jim Wilson said: “I’d like to personally thank the groups who came together to raise over £1000 to make this possible along with the staff at Stena Line.
“There is a strong community ethos in East Belfast and we are delighted to send the family across to make special memories with Adam and his brother Jake.”