Six-year-old Ellie Sloan loves visiting Children’s Hospice, where ‘every day is filled with colour and care’, after she was left disabled after brain tumour surgery.
Ellie’s Mum, Michelle and Dad, Philip share the family’s story.
“Ellie is the wee boss,” says Philip, Ellie’s Dad. “She absolutely loves her music, it’s always on in our house. She likes peace and quiet too, she likes her own company. And of course, Ellie loves it here in Hospice too.”
Mum Michelle adds: “Ellie loves going to Fleming Fulton in Belfast and the school loves her. She has everybody wrapped around her finger. Ellie also loves boys and any male attention.”
Michelle explained that Ellie is non-verbal, and requires a wheelchair for mobility: “Just before her third birthday, Ellie had surgery to remove a non-cancerous brain tumour. Unfortunately, she spent six weeks in intensive care and just never really recovered. We spent seven months in the children’s hospital before we had trial weekends over here in Children’s Hospice.
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“After intensive care in the hospital, we met Rosie, the Hospice nurse. She said, ‘Do you want to go to the Hospice?’ We heard those words, and it was ‘No, no, no’.
“We freaked out straightaway,” explains Philip, “because you think ‘Hospice – that’s end of life’. But we were so wrong. Hospice confounded our expectations. We smile about it now, we love coming up here. It’s like a big family, it’s a happy place, a chilled place.”
“We first came to Hospice in October 2022,” remembers Michelle. “They had Ellie’s room set up with her name, and they had all the toys she liked. We stayed over in the parents accommodation, while the nurses did artwork with Ellie.
“It was lovely and quiet, no hospital machines beeping, so beautiful. I slept so well that night, with no noise! The nurses took full care of Ellie, and they organised a Chinese for us. We were trying to stay awake because it was so early, but we literally just slept from half nine and didn’t waken until seven the next morning. We felt so good for it. It was the silence, and coming out to greenery of the Hospice garden, away from the hustle and bustle of the city.
“We almost didn’t know how to react,” says Philip. “You didn’t think you needed it, until you got that rest. We’re from Newcastle, with the lovely Mourne mountains, the forests, so it was lovely to get a walk in the Children’s Hospice garden.
“The second time Ellie was here she got to enjoy the hydro pool, which was amazing. After watching Ellie lying in ICU fighting for her life, then you come to Hospice and soon she’s in the pool, something we didn’t think was possible. Ellie’s left-hand side can be very tense, so we got emotional when we saw her so relaxed in the pool. I actually did cry, because the physios were great in supporting her. You couldn’t not shed a tear, it was really fabulous.”
“Ellie loves how every day at Hospice is filled with colour and care,” says Michelle. “We get lovely artwork home, cards from Ellie for Mother’s Day and Father’s Day. Ellie loves taking part in the art activities and getting pampered, having her toes and nails painted. She likes getting foot spas when she’s here. She gets spoilt rotten in Hospice!
“We get assisted short breaks in Hospice about four times a year for respite. We love all the staff. It’s lovely that Staff Nurse Megan Boyle, who looked after Ellie in intensive care in the Royal, now works in the Hospice, because she saw Ellie when she was critical on life support.”
“All the staff are just amazing, not just the nurses,” Philip declares, “it’s also the admins, the cleaners, the chefs. It’s like they’re family. You build up support with other Hospice parents too, we all keep in touch.”
“Coming up here and meeting other parents, it’s just like a big family,” adds Michelle. “We don’t have support from family, so we rely on the Hospice. It’s a huge thing to put your trust in the staff, but they know her so well. Medically, they’ve taught us a lot. And we can just pick up the phone, they are there for us for anything.”
“Hospice is the only respite we get,” says Philip, “and I can’t imagine not looking forward to that. We don’t really want to leave Ellie anywhere, but it is needed 100% for our sanity. It’s amazing. And it’s like her wee holiday, so she loves it. The only time we get to switch off properly as mum and dad is when Ellie’s here. Hospice is a great place, I can’t tell you just how much we appreciate it as a family.”
Michelle adds: “We definitely would not have coped without Hospice.”
You can donate now to help NI Hospice continue to be there for more families like Ellie’s.
Ellie’s family have kindly shared their story of hope, colour, and care at Northern Ireland Children’s Hospice. 💜
Watch their video here and see how your support helps bring joy to children like Ellie.
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