Hospice
Fundraising
Monthly short breaks at our Children and Young Adults Service and weekly visits from our new launched Outreach Service has been the best thing to happen to Stacey and her 2 children – including 15 year daughter, Ellie-Mai, who has complex medical needs.
Stacey, from Thorney Close in Sunderland, has shared her story as part of Children’s Hospice Week 2024 (17th to 23rd June).
Organised by Together for Short Lives, it is the only national funding and awareness week for children’s hospices across the UK.
When Ellie-Mai Grant was born in 2009, her mum instantly fell in love. But she soon noticed her daughter wasn’t developing as expected.
“Ellie-Mai wasn’t making the usual milestones and had poor head control,” Stacey explained.
Stacey sought medical advice, but it was more than a year later before an MRI scan revealed Ellie-Mai had a rare brain condition called Lissencephaly, which affects development.
Now 15 years old, Ellie-Mai, who also has epilepsy and scoliosis, requires round-the-clock care. She is non-verbal, uses a wheelchair and is peg-fed.
“It can be hard to leave the house without my sister coming with me to help, as Ellie-Mai needs constant supervision,” Stacey said. “Lewiee also misses out on activities if they aren’t accessible for a wheelchair or if his sister is poorly.”
Ellie-Mai was attending respite care in Sunderland when it was first suggested St Oswald’s Hospice might be better equipped to deal with her complex needs.
Stacey, however, was reluctant to move her daughter.
“I didn’t want to risk upsetting her,” she added.
But when the Sunderland facility closed, Stacey decided to visit St Oswald’s Hospice to see what the Children and Young Adults Service could provide her teenage daughter.
Stacey describes “absolutely loving” the service as soon as she arrived.
“I was impressed with the vibe. Everyone was friendly and all the children were happy and smiling. They were in the garden and doing activities that I knew Ellie-Mai would enjoy.
Stacey continued: “Having nurses and doctors available on site also gave me the confidence that the hospice could meet Ellie-Mai’s medical needs.”
Ellie Mai – who loves getting her nails painted and listening to Disney songs – began attending short breaks at St Oswald’s Hospice three nights a month in September 2023.
According to Mum, Ellie-Mai settled in quickly and loves her visits.
“When I tell her she’s going to see her friends at St Oswald’s Hospice, she starts smiling and waving her hands.”
Stacey describes the short stays as a “godsend for the whole family”.
“I can spend quality time with Lewiee and get a decent night’s sleep knowing Ellie-Mai is being well cared for.”
In addition to the short breaks, the family has also benefited from St Oswald’s Hospice’s new Outreach Service, which launched in 2023.
A nurse-led team travel from the Hospice to Sunderland once a week to visit Ellie-Mai in her home.
There, they care for the teenager and take her on trips, while Stacey is free to go food shopping or do essential jobs around the home.
“The Outreach Service has been such a support for me. The team came on Lewiee’s birthday so I could take him out for the evening. And last Christmas, they took Ellie-Mai shopping to pick out a gift for me. It was lovely and meant so much.”
Stacey says she’d struggle without the support of St Oswald’s Hospice.
“We wouldn’t have the same quality of life,” she said. “Being part of St Oswald’s Hospice is the best thing to have happened to my family.”
Holly Smith, Matron of St Oswald’s Hospice Children and Young Adults Service, added: “It is such a pleasure to care for Ellie-Mai. She is a wonderful girl who loves getting pampered, time in our sensory room and trips out and about.
“It’s also great that we’ve been able to support the family through our Outreach Service.
“The new service means that we can extend the reach of our excellent care to homes in Sunderland and across the North East.”
Angela Egdell, Director of Care Services, is proud of the care provided by St Oswald’s Hospice Children and Young Adults Service – which will celebrate its 21st birthday in July 2024.
She said: “Children’s Hospice Week is a time when we can celebrate the impact we make not only on the children and young adults we care for but for their parents, carers and siblings too.
“We’re so pleased that we can support Ellie-Mai through monthly stays at the hospice and our Outreach Service, and provide quality time for her, her mum and her little brother.
“Our Outreach Service is just one example of the ways St Oswald’s Hospice is adapting its service to better serve the needs of the local community.”
Children’s Hospice Week 2024, organised by Together for Short Lives, celebrates children’s hospice and palliative care services across the UK, and the seriously ill children and young people they support.
Check out some more photos of Ellie-Mai below:
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