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Michael O'Neill presents cardio bike to children's hospital

By Victoria O'Hara

A specialised bike donated by a Northern Ireland charity is to be used in a new research trial which hopes to transform the quality of life for hundreds of children born with congenital heart disease.

Northern Ireland football manager Michael O'Neill, the patron of JTinspires, presented the cardio/technology bike to experts based at the Royal Victoria Hospital yesterday.

Consultant cardiologist Frank Casey will use it as part of the new research study which will involve around 100 five to 15-year-olds with heart defects. JTinspires was formed by the parents of 22-year-old Jonathan Tate, who was born with CHD and given a transplant at the age of 21. But just days after his 22nd birthday in 2012, the young man, who overcame his heart problems to become a personal trainer, died.

As part of efforts to ensure Jonathan's legacy, a handmade carbon fibre Olympic-grade sports wheelchair was also donated to 20-year-old Ryan O'Connor from Dungiven who hopes to compete in the next Transplant Games. He also plays for the Ulster GAA Wheelchair Hurlers Team and The Eagles wheelchair basketball team. Ryan underwent a life-saving heart transplant in 2012 but had to have both legs amputated after he experienced complications.

Jonathan's father Alan said fitness had a huge influence on Jonathan's life and helped him to cope with his condition. The charity set up in his name aims to support research into the benefits of exercise. There is no cure for CHD but the hope of the research study is to reveal whether light to moderate exercise can increase life quality and longevity until a suitable heart donor can be found. The study will monitor the children who will use the bike and is expected to be completed in August 2016.

Mr Tate said: "When we lost our son Jonathan two years ago, research emerged that demonstrated a clear correlation between quality of life, longevity and physical exercise.

"Up until this point, there was a belief that exercise could harm the heart and cause patients with congenital heart disease setbacks. The opposite has now been proven to be the case and we hope this world-first research project now will demonstrate the same results for younger sufferers that will see hearts strengthened through exercise and lead towards potentially pioneering new treatments."

Mr O'Neill, who knew Jonathan personally, said he was honoured to be involved with the charity.

"Congenital heart disease is the most commonly occurring serious congenital abnormality affecting children. As patron of JTinspires, and as someone who knew the inspirational Jonathan Tate - himself a personal trainer, coach and motivator for many - I'm thrilled to get behind this charitable cause."

Factfile

Around 200 babies are born with congenital heart disease (CHD) every year in Northern Ireland. Jonathan Tate who had a CHD underwent a transplant on September 23 2012, but due to multiple organ failure passed away on October 14, 2012.

His parents set up 'JT Inspires' Trust which seeks to raise money to promote health for those with congenital heart conditions.

Case study Ryan O'Connor: ‘I want to honour Jonathan... and I want to survive’

I was born with congenital heart disease and from an early age it was upsetting not being able to keep up with my friends in the playground, on the football or Gaelic pitch. I simply had no energy.

This continued through my teens and the only hope I had was a heart transplant. In September 2012, I was admitted to The Freeman Hospital in Newcastle-Upon-Tyne where a donor heart became available in November 2012. The surgical team were excellent, but two days after the transplant I had a cardiac arrest — the outcome of this was that two weeks later, a decision was made to amputate both my legs from just above the knees.

I remember vaguely the surgeons telling me through the trauma that this procedure was my only hope and recall it as being a ‘bittersweet’ moment — having a chance to let my new heart work again felt like a rebirth but losing my legs was heartbreaking. They then discovered I had an onset of a carotid aneurysm. I felt a lump in my neck which grew into the size of a tennis ball — again as a result of my body adjusting to the new heart. I was very lucky.

I was more worried about those around me, my family, friends and supporters than myself — I didn’t want to let anyone down as we’d been on such a long journey. I’m now preparing for further surgery next week to enable me to use prosthetic limbs again. For some time, my left leg stump has been causing some pain. The cause has been identified as a blood circulation issue.

This operation is not without its risks but knowing I have a team of supporters, a new athlete’s chair and having Michael O’Neill in touch is going to give me the strength to pull through. It was so amazing how my experience was so like Jonathan’s. His family went through the devastation of losing him but he was an inspiration and I want to keep his legacy going.

I’m now involved in wheelchair basketball and hurling. I’m being as positive as possible. It is hard but the support I have is just unreal. My goal is to compete in the Transplant Games. I remember just saying to myself mentally — I want to fight through this and not give up. I’m 21 in May — the last two years have been a roller-coaster. It seems like yesterday lying there just telling the doctor to do whatever he needed to do.

But, as I said, if Jonathan can inspire me — I want to honour his legacy. I want to survive.

‘Why my son will not have died in vain’ - By Alan Tate

Jonathan was born in 1990 with congenital heart disease. Despite his physical restrictions, he qualified as a personal trainer. He went for a heart transplant in June 2012.

One of his main aims was that after the transplant he would come into the Royal and work with some of the young people with congenital heart disease.

Because Jonathan didn’t survive the transplant, in September 2012 we decided we would take his goals and legacy forward by funding the type of work he wanted to be involved in. Our main aim is to motivate young people with CHD knowing there is positive outcomes.

I’ve been asked many times if this helps after losing him. There are two parallel roads. There is our road, our journey dealing with the grief of losing Jonathan and there is the road in promoting the charity and they are parallel. But seeing somebody like Ryan O’Connor being helped really does help.

Alan Tate’s son Jonathan died following transplant surgery at 22.

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