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Belfast Live
Belfast Live
Orlaith Clinton

Co Antrim mum's plea to 'give son a fighting chance' as he battles rare disease

A Co Antrim mum has appealed for the public's help as she searches for easier accessible treatments to help her teenage son.

Criostái Connolly, from Loughgiel, was diagnosed with Duchenne Muscular Dystrophy in 2013, a condition which causes the wasting of muscle throughout the body.

The 14-year-old has been wheelchair bound since he was nine, with no cures for the condition or treatments available in Northern Ireland to help him.

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Desperate to help their boy, the Connolly family are now seeking treatments in America, which come at a hefty cost but with huge benefit to his health.

Mum Leona said: "In 2013 my world fell apart when my beautiful boy was diagnosed with Duchenne Muscular Dystrophy. DMD is a muscle wasting condition that affects every muscle in the body including the heart, lungs and the brain. Our hearts broke as the doctor told us what the future would hold for our precious boy.

"A life full of struggles he would be wheelchair bound and slowly deteriorate in front of our eyes and we should prepare ourselves for only having him with us for a few short years, as DMD will take him in his teens, and there was nothing they could do - no treatments no cure, nothing we could do to fix our boy.

"Devastating words no parent should have to hear."

Criostái is described as "the sweetest wee boy" with a great sense of humour and passion for watching Liverpool Football Club play - one day he hopes to be their manager.

The teenager depends on his parents and older sisters for all his needs.

Over the last number of years, the Connolly family has been desperately searching for any possible treatment and have found a clinic in America where he can receive "life changing treatment" and treatment that will prolong his life and keep him from deteriorating.

"He will need this treatment every 12 weeks," Leona told Belfast Live.

"When we got the diagnosis, we were just left with a folder of horrible information. It is horrendous and took us a long time to come to terms with how traumatic the experience was, never-mind trying to deal with this devastation.

"The only support we really got was from other parents. Last year I was on Facebook and had saw another family who had a son with DMD, and they had taken him to America for treatment. I thought 'this couldn't be right'.

"So I reached out to the family to ask what the treatment was and for more information. Jamie, who is from Newry, set up a charity for his son called Fight for Alfie, and he invited us to join them.

"When I went to meet them and saw how well their wee boy was doing, that was the decider for me. We fundraised ourselves and then the charity organised everything else for us. Fight for Alife have been absolutely tremendous, if it weren't for them we wouldn't be able to do what we are doing.

"We have already been to America and Criostái has had two treatments and the results have been amazing. He has made significant progress and has improved strength by 45% so we know it’s working.

"Each treatment costs approximately £12,000 including travel expenses so we are trying to raise £50,000 to cover the costs for a year in the hope it becomes more readily available for us.

"Please help us give our hero a fighting chance."

To donate to Criostái's fundraiser, please follow this link.

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