Family from Northern Ireland raise thousands for St Oswald’s Hospice for “life-changing kindness” after son’s death

The Grant family from Kilcoo, Northern Ireland, were devastated when their beloved four-year-old son, Ollie, died at The Freeman Hospital in Newcastle after major heart surgery. Miles from home, it was St Oswald’s Hospice that stepped in to help when the Grants were told they could only visit Ollie during restricted times.

Ollie’s body was moved to our Children and Young Adults Service where the family could spend uninterrupted time with their son.

Ollie’s parents, sisters, grandparents, uncle and auntie also stayed in our family accommodation.

To thank the team’s kindness during such a difficult time, the family have been fundraising for us in their hometown.

Mum Riona, dad Damien, and Riona’s mum, Helen King, returned to St Oswald’s Hospice recently to present members of the Children and Young Adults Service with a cheque for £3,292.94.

Damien said:

“We wanted to thank the Hospice for what they did for the family.  The friendliness of the staff and the level of service – nothing was ever too much.

“Even the first time we went into the room with Ollie, a nurse was there reading to him. You could genuinely tell people really cared.”

Riona added:

“Walking back into the hospice has given me a lot of peace. What the team did for us, and the kindness they showed, changed our lives forever.”

Riona was pregnant when she and Damien were told their unborn son had a severe heart condition, Hypoplastic Left Heart Syndrome, and would need surgery within days of his birth.

As soon as Ollie was born, he was taken to Birmingham Children’s Hospital where the newborn underwent open heart surgery.

At 12 weeks old, Ollie suffered a massive stroke while at Birmingham, which left him with mobility issues and complex medical conditions including cerebral palsy and epilepsy.

Second open heart surgery at six months old resulted in additional complications and he was immediately put on the heart transplant list.

Three months later though, Ollie’s heart function regained and he was taken off the list.

The family returned to Northern Ireland and despite Ollie’s medical needs, he lit up every room he entered.

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Ollie's mum, Riona, said:

“He had such a beautiful energy about him. He was so happy, and although he was non-verbal, he communicated in his own way. Everybody who met Ollie instantly fell in love with him. He loved music and being outside.”

On 30th October 2022 – a few weeks after Ollie’s fourth birthday, the family travelled to the North East of England where Ollie had his third open heart surgery at The Freeman Hospital. The family stayed in the hospital’s family accommodation.

Sadly, Ollie suffered post-op complications once more and he was again listed on the urgent transplant list.

At the start of 2023, Ollie was in the Freeman Hospital when his condition severely deteriorated. A CT scan showed he had suffered a catastrophic stroke.

Ollie died on 13th January, 2023, surrounded by his mum, dad, sisters (five-year-old Aria and one-year-old Lottie), grandparents Helen and Barry, and uncle and auntie, Brian and Lauren.

For the family, their devastation was compounded by the fact they were away from their home, family and friends.

The four-year-old’s body was moved to the hospital morgue where the family were told they would need to book an appointment to visit him.

Desperate to remain by Ollie’s side, they asked if there was any other option. The hospital suggested St Oswald’s Hospice.

Riona recalled:

“The hospital phoned the hospice and the response was life-changing for us. They said they could take Ollie and put him in a cold cot where we could visit him whenever we liked and that the whole family could stay in the family accommodation.

“The team were wonderful. They washed and dressed Ollie and they brought the family food, which meant we could stay with him throughout.”

Having that family time with Ollie in a calm and relaxed environment meant a huge amount to Riona and her close-knit family.

She said:

“We’d been away for three months and so we knew, once we got back to Ireland, we would be bombarded by all our family and friends who would want to see us. So to have that one-to-one time with our son was invaluable.

“Ollie had been attached to so many pipes, tubes and machinery from October until he passed away, and so those few days, where you could just see him completely free, meant so much.

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Mum, Riona, said:

“Damien and I truly believe that if we didn’t have that time, I don’t think we’d have been able to come to terms with Ollie’s death.”

Helen King, known to the family as ‘Granny King’, added:

“When Ollie had been in the hospital, it was difficult for us all to be in the same place, but at St Oswald’s Hospice, we could keep the family unit together and could support each other.

“We got great compassion and care, especially the girls, Aria and Lottie. They loved playing in the family room and made friends with the other children who were there.”

The Grant family had already begun fundraising to help raise awareness for organ donation and after Ollie sadly died, the family continued their efforts.

They decided the funds raised would be split equally between four charities that have helped them – Northern Ireland Children’s Hospice, Children’s Heartbeat Trust, Heartbeat NI and St Oswald’s Hospice.

The family held ‘Breakfast for Ollie’ events in their home town and designed and sold sports jerseys, which were worn by their County’s football club as they warmed up for a cup final match.

The total fund of £13,171.76 has amounted to just over £3,292 for each of the four charities.

Riona, Damien and Helen returned to the North East of England last week where they visited St Oswald’s Hospice and were reunited with some of our team who had supported the family after Ollie died.

Holly Smith, Acting Matron of the Children and Young Adults Service at St Oswald’s Hospice, added:

“It was understandably a very difficult time when the Grants arrived at the hospice but we tried to do everything we could to support the family.

“It was lovely seeing Riona, Damien and Helen again last week and finding out about their girls. The fact they’ve chosen to raise funds for St Oswald’s Hospice means a huge amount to all the team.”

Steph Edusei, CEO at St Oswald’s Hospice added:

“At St Oswald’s Hospice, we pride ourselves on supporting families as well as our patients. Sadly, Ollie wasn’t a patient with us but that didn’t diminish the care we provided him and his family. Losing a son, grandson, brother and nephew will have been devastating to the family but I’m glad we were able to provide a safe and comfortable environment that allowed the family to begin their grieving process together.”

We are so thankful for the incredible fundraising the Grant family have done to help us, and everyone at the hospice wishes them the very best for the future.

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