Hope for Limerick teen struck down by sudden death syndrome 

Billy Ryan, age 14, at home in Shanacloon, Cappamore, Limerick today with his mother Donna and father Liam. Picture: Brian Arthur

A 14-year-old Limerick boy who survived sudden death syndrome last year has been given a new lease of life thanks to a drug which his family hopes he can still reap the benefits of long-term.

Billy Ryan, from the Cappamore area in east Limerick, is making huge strides in his recovery from the condition, which impacts hundreds of people every year.

Doctors believe that Billy “had fought with everything in his body to stay alive” after a virus attacked his heart in May last year.

Billy’s mother Donna told the Irish Examiner that their “prayers have been answered” since Billy started the three-month trial of slow sodium 600mg in February.

The drug is listed by the Health Products Regulatory Authority (HPRA) as an exempt medical product. It is being made available to Billy via Article 5 of Directive 2001/83/EC.

This gives way to unauthorised medicines being supplied by a registered doctor “who has prescribed the product for a patient under his or her direct responsibility to fulfil the special needs of those patients” according to the HPRA.

Donna said the almost-immediate effects of Billy taking the drug were phenomenal. It will be determined next month whether he is to stay on the drug one year after the onset of his traumatic ordeal.

“Until then we won’t know what happens if he comes off the slow sodium. What happens if the symptoms are still the same again? If he stays on them, how long can he be on them for? Is there availability of them? There’s a lot of questions but we’re trying to stay hopeful.” 

The mother of three said that everything changed for the Ryan family on May 5, 2021.

“It’s literally like someone flipped a switch," she said.

Billy, a keen horse rider, was training for the upcoming competition season with his horse after school, as he had done most afternoons.

“He suddenly said he wasn’t feeling well and wanted to go home, which is very unlike him,” Donna said.

“He’d spend all day with his horse if he could, so this alone was quite unusual.” 

Billy slept in the car on the way home and went to bed when they got there. His family tried to piece together what could possibly have taken hold of the young boy so quickly.

Several GP appointments followed in the days after, where tests were run to rule out possible causes such as Lyme's disease from a tick bite.

“He couldn't walk, he was sleeping too much, he wouldn’t eat," said Donna. “He couldn’t physically do anything. His whole body shut down.” 

The family’s GP referred Billy to a paediatric doctor who told them to come straight into his clinic.

Billy was put through to another doctor in Crumlin, Dublin, while also undergoing tests in University Hospital Limerick to determine the cause of his condition.

For eight weeks, the Ryan family had no answers as to what was happening to Billy. In hindsight, Donna said those weeks “felt like seconds”.

“You get more overwhelmed now rather than when you’re going through it because when you’re going through it it’s so traumatic,” she said.

She relentlessly researched how to help her son, trialling therapies such as acupuncture and osteopathy while even sending off DNA samples to get answers.

“I knew something was wrong, I needed to heal him and relieve him of his pain. You kind of go into adrenaline mode,” Donna said.

“It’s a mother’s instinct; you don’t stop until you’ve an answer or see improvement.”

Finally, it was explained that a virus, commonly known as sudden death syndrome, had attacked Billy’s heart that day in May.

“I’ll never forget the moment the doctor told me, and Billy was sitting there with us. I felt blessed he was still alive.” 

 The family were told that Billy’s body had fought to stay alive before his autoimmune system shut down and his heart continued to respond as if the virus was present.

"His body was constantly fighting; he was completely burned out.” The Ryan family lost a relation some years ago to sudden death syndrome, with Donna saying the diagnosis brought flashbacks to what could have happened to Billy.

"But then it was the relief of realising that he’d been through the worst, and that it could only get better from that point,” Donna said.

What followed was months of recovery and progress as Billy was diagnosed with postural orthostatic tachycardia syndrome, a condition that affects bloodflow.

“He’s been learning to live with that since. We’ve had months of him not being able to get out of bed, it’s not for want of trying, his body simply couldn’t,” said Donna.

Despite enduring the heartbreak of having to sell his beloved horse last year after falling ill, Billy was eager to get back to the stables, something he achieved in recent weeks.

“We thought we’d never see him on a horse again so to see him that day, I could have burst,” said Donna.

“He’s incredibly determined, there wasn’t one day in the past 10 months when he was down on himself."

Billy contracted Covid-19 in February with Donna saying the family’s “whole world nearly came down”.

“We’d avoided this for two years, we’d stopped doing things for fear of bringing it in the door. But Billy powered through, which was a huge relief.” 

Speaking about her son’s recovery, Donna said: “I’m not 100% sure that his medication alone will fix him, we’re exploring other therapies to build up his strength.

“He enjoys swim therapy, he does 30 minutes every week and he just loves it. He says he has no symptoms in the pool, he feels like himself when he’s in the water. If you’re 14, you’re meant to be living the best years of your life with your friends and doing what you love.

“This summer is going to be all about getting back to being with the horses, returning to his passion.”