The Grant family—parents Riona and Damien, seven-year-old Aria, and three-year-old Lottie—are a lovely young family from Kilcoo in County Down.
They have received support from Hospice since their beloved son Ollie was born in 2018 with a severe heart condition. Sadly, Ollie passed away in January 2023. The family bravely shares their heartwarming and inspiring story below as part of our 2024 Summer Appeal.
Mum Riona said: “Ollie was diagnosed at my 20-week scan with hypoplastic left heart syndrome – the left side of his heart never developed properly. Unfortunately, there is no permanent cure. Ollie had multiple open-heart surgeries to prolong his life.
“Some children with the condition receive a transplant and live a long life. Unfortunately, that just wasn’t how our story ended.
“When Ollie was 12 weeks old, he deteriorated rapidly and had a stroke. Then he was diagnosed with cerebral palsy and epilepsy. He was non-verbal, he couldn’t swallow so he was all tube-fed, but it was just amazing to watch what he achieved.”
“He wasn’t able to walk until he was four years of age,” says Riona.
"Getting him to walk was a fantastic achievement. The heart condition did affect his breathing, and mobility was a massive issue so he couldn’t walk very far, but he certainly ploughed on and gave it his all.”
Damien adds: “Considering all the surgeries, the brain-damaging stroke and a period of blindness, it was amazing that he was still always smiling and having fun.”
“For so long in the hospital we were told that Ollie would need 24-hour nursing care, I remember thinking if only there were some way that we could maybe have a nurse come with us to go to do fun things.
“That’s when Children’s Hospice first got involved,” says Riona. “A social worker visited the ward to discuss the support available to families, such as the Hospice. My initial thoughts were that it would just be scary, end-of-life care. But the reality was completely different.”
“Hospice was a godsend,” adds Damien. “Its communal areas were brilliant because you could meet people in the same situation as yourself and talk to them as peers. Hospice is a great place, not only for the child but also for the parents.
“We also wanted to make special memories together as a family. We went from being told that he would never leave his bed and
that we had only days left with him, to being able to take a break, and take him out to the swing park.
“He used to love getting into the silver tube up in Hospice’s play park. He was nonverbal but he could say ‘Hiya!’, so he used to roar ‘Hiya!’ and giggle at the echoes in this tube. There are so many positive memories there.”
Riona says: “The first couple of Hospice visits, because we hadn’t been away from him for nine months, it seemed very daunting, but it was just amazing. He was having the time of his life, doing arts and crafts, singing and playing with the other children and out in the garden.
“He absolutely loved being in the Hospice swimming pool with the physio, and we got in the pool with him too. Just doing things that we thought would never be physically possible, the Hospice made them possible.
Damien said: “During Covid, we had Hospice at Home care. Julie Chambers, our Nurse, would come out to the house to care for Ollie, and it would give us a break.”
“Julie would bathe Ollie, take him for a long walk, and prepare all his medicines for that day,” says Riona. “I could then go grocery shopping. Something mundane, but when you have a child who’s terminally ill, it is so much harder to do the daily things that people take for granted.
When Ollie passed, overnight our lives changed completely,” says Damien. “So when Lauren came on board with the bereavement counselling, that was a welcome bit of continuity. Even though it was difficult having Ollie with his health conditions, having him was still the best days of our lives.”
Riona added: “Myself and Damien did a couple of sessions, but we felt that our eldest child needed the priority of the bereavement service. So Lauren did numerous sessions with Aria, which has definitely helped her.
Lauren worked with the artistic Aria during cathartic therapy sessions. Together, they made memory jars using different colours of sand to
represent her feelings and discuss cherished memories of Ollie.
Riona paid tribute to Julie and Lauren from the Children’s Hospice, saying that “the two of them have been absolute lifesavers for us, along with the in-house staff at Children’s Hospice. They have all been fantastic.”
Damien said: “I don’t know who else we could have turned to if it hadn’t been for the Children’s Hospice. The quality of life wouldn’t have been as good for Ollie, or for us.”
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