Wednesday, March 22, 2023


THE family of a brave and beautiful four-year-old who died in January following his fight against a rare heart condition have appealed for people to have open, and honest, discussions about organ donation. Ollie Grant’s parents have urged people to discuss their wishes with their loved ones in a bid to ensure there is an element of clarity in what is one the hardest times in a person’s life, when you know nothing more can be done to save a loved one.

The Kilcoo couple were speaking from their home on Monday, less than two months after they buried their son, their hero. With his beautiful big eyes, trademark, and enviable, long eyelashes, his love of diggers and playing outside in his sandpit, and his warm and unapologetically affectionate hugs, Ollie was, and remains, central to the lives of Riona and Damien, plus his sisters fiveyear-old Aria and Lottie (2) and, equally, they remain central to his. It has been a tumultuous six weeks for the Grants, filled with a yet another level and rollercoaster of emotions, but in that time, and when they realised that their precious son’s time on earth was nearing an end, they made a promise to him – to try and help other families who are following a similar path to theirs. And in Newcastle on Saturday, the community came out in force to help them with Ollie’s legacy – to help raise vital funds for some of the charities that have been with them throughout his life. Family, friends and strangers – including a family from Belfast who just happened to hear about their fundraiser during a radio shout-out – helped raised in excess of £11,000. And, with donations still coming in, Ollie’s mummy and daddy say they are indebted to everyone who showed their support, including a very special visit from Dáithí MacGabhann (6), from Belfast, who is on the organ transplant waiting list and whose family have campaigned for a new law, which will change the process in Northern Ireland to an opt-out system meaning people would automatically become organ donors unless they specifically state otherwise.

Ollie’s death came just days before the leaders of Northern Ireland’s five main political parties jointly wrote to Secretary of State Chris Heaton-Harris calling for a legislative intervention to get a soft opt-out donation process, approved by the Assembly last year, up and running. Just last week, MPs at Westminster backed the legislation, known as Dáithí’s Law, paving the way for the optout system to be implemented here, and which had been delayed due to the political stalemate at Stormont. The government agreed to amend another bill to ensure that Northern Ireland joins the rest of the UK in having new organ donation laws. It has been fasttracked through parliament’.

After becoming law on Tuesday, it will take around three months until the opt-out system can effectively begin. It could be in place by the start of the summer; meaning all adults would be considered a potential organ donor following their death – unless they specifically stated otherwise. While welcoming this, the Grants say even more needs done, and on so many levels – and hope that in time, the optout system will be amended to include donors aged 17 and under. Ollie passed away while being cared for at the Freeman Hospital in England; just one of two sites in the UK to carry out heart and lung transplants on children. Born with hypoplastic left heart syndrome – a critical congenital defect which affects normal blood flow through the heart and stunts this vital organ’s growth – Ollie had undergone numerous operations and treatments following the diagnosis, which came at his 20- week scan. His first heart surgery was performed when he was just a few days old, and signalled the start of numerous procedures, including three open heart surgeries. His brave battle prompted his devoted mummy and daddy to launch a campaign encouraging more people to register as organ donors and give the gift of life.

Even before his passing, which, whilst they knew their little boy was ill, came suddenly and unexpectedly, they had campaigned and fundraised. Their hope is fewer and fewer families have to go through the agony, or loss, they have endured. Ollie, who was on the transplant waiting list, had undergone his latest surgery just before Christmas however his condition deteriorated and, on Friday 13 January, he died in the arms of his parents. He passed away after suffering a stroke following his third major heart surgery. During his life, Riona and Damien’s miracle boy defied the expectations of medical professionals; having suffered his first stroke when he was just 12 weeks old, leaving him with cerebral palsy and epilepsy. They say he will be forever remembered for his warm smile and happiness, and his natural desire to show love and affection and make people happy.

Ollie was buried at St Patrick’s Cemetery in Bryansford following a Mass of the Angels at The Church of Our Lady of the Assumption in Newcastle, during which Fr Charlie Byrne and Fr Jim Crudden said the young boy “fought the good fight and on different occasions, when he seemed to be very ill, he made that recovery again and had that great will to live.” Adding that Ollie “reached so many milestones that seemed impossible when he was born,” the local clergymen said “he gave a lot and received a lot of love during his four years.”

Despite the rawness of their grief, and as they and their daughters plus their family and friends come to terms with Ollie’s still so recent passing, the Grants are keen to do whatever they can to raise money that will support other families with children requiring transplant surgery. Saturday’s fundraiser and awareness event in Newcastle will be the first of many in Ollie’s name, with Damien adding he already has a few ideas in the pipeline! Staged at Doc’s Bistro, which is owned by Damien’s cousin Caroline Morrison and her husband Morgan, and organised under the ‘Team Ollie’ title, ‘Wee Ollie’s Big Breakfast’ ran from 8.30am through to early afternoon. With the goal of raising awareness and encouraging the conversation about organ donation and its importance, this is, without doubt, the start of Ollie’s legacy.

Riona and Damien say they are overwhelmed by the generosity shown at the weekend’s fundraiser as well as to the many that have made, and can still make, donations online via the link. The money will be split between The Children’s Heartbeat Trust, Heartbeat NI, the Northern Ireland Children’s Hospice and St Oswald’s Hospice in England, where Ollie was transferred to after his passing, and where some of his closest relatives were able to spend precious hours, and days, with him before his final journey home.

Riona and Damien say they will forever be grateful for the medical and professional help they have received, and paid a special mention to the team at St Oswald’s who helped them through the initial stages after Ollie’s passing. “We were on our own, we had no car and we were very much isolated in a horrible situation. They put us all up, they provided anything and everything,” Riona said. “We were able to stay by his side, day and night, and that was so special and important for us,” Damien explained, adding that one of the hospice team went out of their way to have a casting kit delivered, which created a beautifully detailed and precious sculpture of the couple holding Ollie’s hand. Showing some of the last photographs they took as a family, on New Year’s Eve, and with the full-blown love, and ultimately loss, visible on their faces, the couple concede that if the donor legislation had been in place “things might be different” for their family. “We are encouraging people to have the conversation about organ donation, so partners, family members and friends know your wishes,” said Damien. Turning their attention to progress made in terms of the new opt-out legislation, Riona said: “For me, it’s bittersweet. It’s absolutely amazing that finally they have passed this motion but in terms of our situation, and although we don’t have a crystal ball and don’t know that things would have ended up any different, it’s too little, too late for Ollie.”

Damien continued: “If it had been in action when Ollie was six months old it could have saved us a lot of stress. Basically, we were told in a roundabout way that there weren’t enough organs available compared to the number of people needing transplants, and we had to fight tooth and nail to get him onto the list. And the alternative could have been very different; the more organs that become available means there’s a better chance of getting a better match, which lessens the risk of organ rejection and in turn a better result and a better quality of life.” Highlighting that during Ollie’s lifetime they witnessed children, all of primary school age, having successful transplants, as well as others who, like their son, sadly passed whilst on the transplant list, Damien and Riona said their little boy overcame so many hurdles during his life, indicating his fighting spirit. “There have been so many who have received the gift of life, but there are too many who never got the chance,” said Riona. “There needs to be a greater understanding around organ donation, and even from what we have been through, and what we have told people in the past few weeks about what it entails, people just need to be aware of the process and how it all unfolds.” “We need to talk about organ donation, make it less taboo. Let’s talk about it more. Let it be talked about. A lot of people don’t know about other people’s wishes,” added Damien. “Just because Ollie has passed away, the charities continue to care, to chat with us, visit us and see how we and the girls are doing and we are so appreciative of that and everyone who has been, and continues to be, there for us.” “We as a family need a bit of time to digest the last four years, it’s been an emotional rollercoaster,” Riona said, adding that “it was a tough four years”.

Adding that they will continue with their campaigning, but need “to try and accept what’s happened and for now, we just need a bit of a break and spend time with our girls dealing with this,” the couple say it is a privilege to be Ollie’s mummy and daddy. “We’re not saying everyone needs to be an organ donor. Just have the conversation so those that mean the most to you are aware of what you want. Don’t do it in silence, vocalise it. It’s like an insurance policy, people take it out but never think they will use it, and the same thing applies with organ donation. “If we can urge more people to have that chat now, then if anything was to happen, then they know what to do, and there’s no regrets down the line,” concluded Damien.

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