Belfast Giants provides a lifeline for NI teens through organ donation

A Northern Irish mother has praised the Belfast Giants for supporting her family in trying times.

Glenda Kohei’s son Dylan, who turns 18 this week, was born with a rare condition that means his body is unable to process certain amino acids.

After years of hospitalization and horrific procedures, the young man, who is from Cumber in Codown, underwent a live transplant, but he also delivered a liver to a woman who was waiting for that important phone call.

Speaking on Belfast Live, Glinda said that although her son had health issues, he never had a smile on his face, especially on Giants Day.

He said: “Dylan was born with a rare metabolic condition called maple syrup urine disease and was the only child in Northern Ireland to have this condition at the time.”

“This is a condition that causes proteins. There are three amino acids in the proteins and one of them becomes toxic and enlarges in the brain. Dylan was very sick when he was born and was diagnosed at 12 days.”

“He had to follow a strict diet that did not include a protein diet and he was not given meat because most of his food was prescribed to him. When he was young, the vaccination of the child caused his blood level to rise and he appeared to have had a stroke.

Dylan could not stand, stand, speak, or do anything. It was like a bodily injury. To correct this, he still had to eat a high-calorie meal.

“He was diagnosed with cerebral palsy when he was seven years old. We used to call him his blinking fingers because he always walks on tiptoe.”

Glenda saw her son go to the intensive care unit nine times to improve his metabolic balance.

Dylan was in the hospital every two weeks and had a blood test twice a week for the first year of life. If the levels are high, they are every day.

In September 2016, Dylan vomited, fell seriously ill, suffered multiple seizures, and was urgently taken to the hospital.

“It was the only time we got an ambulance for Dylan,” Glenda added.

“Actually we had to call him when we went to the hospital because he was having really violent seizures and when he was taken to the hospital he was taken straight to the ICU. It was the scariest moment ever.

“At the time we spoke to the doctors as her seizures became more frequent and more difficult to manage. We discussed liver transplantation.

“Dylan underwent a transplant on October 1, 2019 – he was 15 and was very happy to continue with him. When we discussed it with him, everyone was on his side. He was totally dependent on him.

“He had a week of assessments before he was listed. In July 2017, we found out that we had traveled to Birmingham to sign consent documents and had received four false alarms between then and 2019. It was very difficult for us. When he called, it wasn’t as easy as Jump on a plane.

“We had to start his emergency protocol four hours before the theater started. We did it four times and then were told it was a false alarm.”

Dylan underwent a domino transplant, which according to the National Library of Medicine involves transplanting a liver from a patient with a metabolic disease to a patient with end-stage liver disease in the hope that the recipient does not develop metabolic syndrome or that the recurrent syndrome has little effect.

“When they first mentioned it, Dylan didn’t think about it. He just said, ‘Yeah, I wouldn’t need it,'” Glenda added.

“After transplant we were told they could do it. He went to a woman, we know everything. He could have lived anywhere in the UK.”

During his medical journey, during extremely high and low falls, the Belfast Giants played an important role in his recovery.

He has made lifelong friendships with the team and a huge following of the Giants in Belfast and Northern Ireland.

Glenda continued: “The Belfast giants have been a lifeline for Dylan and our family, we have created a very close relationship with so many people through the support they have given us over the past few years and they never take credit for it.

“It is not just hockey for these kids like Dylan, it replaces fear with happiness and allows them to just be kids and also a platform to raise awareness about organ donation, forget about daily struggles, give them confidence and security. Nothing is impossible and above all, they smile when there is a moment Difficult.

Above all, they see personality, not disability or disease. Dylan turns 18 this week and every day, this is the last home game for the Giants – of course we’ll be there! “