A Northern Ireland mum has praised the Belfast Giants for supporting their family through difficult times.
Glenda Caughey's son Dylan, who will turn 18 this week, was born with a rare condition which meant his body could not process certain amino acids.
After years of frightening hospital admissions and procedures, the young man, who is from Comber in Co Down, went through a life changing live transplant - but also donated his liver to a female who was waiting on that important phonecall.
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Speaking to Belfast Live, Glenda said even though her son has had his medical challenges, he is never without a smile on his face, especially on game day for the Giants.
"Dylan was born with a rare metabolic condition called maple syrup urine disease and at the time, he was the only child in Northern Ireland to have this condition," she said.
"It is a condition which causes protein. There are three amino acids in protein and one of them becomes toxic and would swell on his brain. Dylan was very poorly when he was born and got this diagnosis at 12 days old. He then spent a long time in hospital attached to ventilators - it was scary.
"He had to have a strict no protein diet and wasn't allowed meat, with most of his food being prescription. When he was younger, his baby immunisations would have caused his blood levels to rise and it was like he had a stroke.
"Dylan wouldn't be able to sit up, stand, speak, anything. It was like a trauma to the body. In order to correct that again he had to go on to a high calorie tube feed.
"He was then diagnosed with Cerebral Palsy when he was seven. We would have called him twinkle toes because he was always walking on his toes."
Glenda watched her son be admitted to Intensive Care nine times to correct his metabolic balance.
Every other week, Dylan was in hospital and would have bloods done twice a week during the first year of his life. If levels were high, it would be every day.
In September 2016, Dylan vomited and took very ill, taking multiple seizures and being rushed to hospital.
"That was the one and only time we had to ring an ambulance for Dylan," Glenda added.
"We actually had to ring it when we were on route to hospital because he took a really violence seizure and when they got him in he was taken straight to ICU. That was the scariest moment we have ever had.
"It was then, that we had the chat with doctors that his episodes were becoming more frequent, and harder to manage. We discussed a liver transplant.
"Dylan had the transplant on October 1, 2019 - he was 15 and was really happy to go ahead with it. When we discussed it with him, he was all for it. It was entirely up to him.
"He has one week of assessments before he was put on the list. We found out in July 2017 that we flew to Birmingham to sign consent papers and between then and 2019, he had four false alarm calls. They were really hard on us. When he got the phonecall it wasn't as simple as us jumping on a plane.
"We had to kick start his emergency protocol until four hours before theatre. We done that four times and then were told they were false alarm calls."
Dylan went through what's known as a domino transplant, which according to the National Library of Medicine, involves transplanting liver from a patient with metabolic disease into a patient with end‐stage liver disease with the expectation that the recipient will not develop the metabolic syndrome or the recurrent syndrome will have minimal affect.
"When they first mentioned it, Dylan didn't think twice. He just said 'yes, I will have no need for it'," Glenda added.
"After the transplant we were told that they were able to do it. It went to a female, that's all we know. She could live anywhere in the UK at all."
Throughout his medical journey, during the highs and very low lows, the Belfast Giants have played a critical role in his recovery.
He has made friends for life in the team and in the huge following that the Giants have across Belfast and Northern Ireland.
Glenda continued: "The Belfast Giants have been a lifeline for Dylan and our family we have formed very close bonds with a lot of people through the support they have given us over the last few years and they never take any credit for it.
"It's not just hockey for these kids like Dylan, it replaces fear with happiness and lets them just be kids as well as a platform to help raise awareness for organ donation, forget about the struggles they have everyday in life it gives them confidence and belief that nothing is impossible and most importantly keeps them smiling when times are tough.
"And most off all they see the person and not the disability or illness. Dylan is 18 this week and of all days, it is the last home game of the Giant's season - obviously we will be there!"
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