A Derry schoolgirl is lighting up the Northern Ireland’s Children’s Hospice Little Stars Appeal to encourage others to make a donation this Christmas.
Seven-year-old Seanain McCallion was born with spina bifida and hydrocephalus and her family have been regular users of hospice services since she was 18 months old.
This festive season her big Christmas wish is for donations to ensure young people affected by life-limiting conditions across the North can avail of these lifeline services. Seanain, who requires 24-hour care, has received a new diagnosis each year of her life and will undergo further surgery in December. Cold weather further exasperates Seanain’s symptoms and as a result she is often ill over the Christmas period.
As it is her favourite time of year, the Northern Ireland Children’s Hospice threw an early Christmas party for Seanain in June so she could celebrate the holiday with her family.
Seanain’s mum, Kathleen, said: “Seanain loves fairy tales and dressing up so you can imagine the delight on her face when she arrived at the party to be met by Elsa and Anna, the princesses from Disney’s ‘Frozen’.
“She had an amazing day singing her heart out to all her favourite Disney songs with her sisters Grace and Chloe, and really feeling like a princess for the day.
“It was a magical day for the whole family to have such a precious day together.”
The Northern Ireland Children’s Hospice further surprised Seanain by creating an animated princess character of her.. “The Princess Seanain character looks fantastic. She has a wheelchair, glasses, dark hair and a big smile, just like Seanain. It was another incredible surprise,” Kathleen continued.
The Northern Ireland’s Children’s Hospice is the only children’s Hospice in the North and cares for young people of all ages including babies.
Kathleen said: “When we were first referred to the Hospice that was very daunting as there is a misconception that hospice services are only suitable for those at the end of life. How wrong that is!
“The Hospice has honestly opened a whole new world for us and we feel incredibly lucky to have the security net for support when we need it most.
“As Seanain gets older her needs are increasing and as her main carer it can be extremely exhausting.
“When Seanain goes to the Hospice to stay for a couple of days, she absolutely loves it and looks forward to it like other kids look forward to weekend sleepovers.
“The staff go above and beyond and are on hand to cater for each and every one of Seanain’s needs. It’s incredible how relaxed we are to leave her overnight because we know that she just loves being there, and for my husband and I, having that alone time together is really important.
“The care provided is amazing, and not just to Seanain but to her siblings and the entire family. It feels like a second home to us all. It’s a place where Seanain gets to have fun and live as normal a life as possible.
“She is such a bright spark and is determined to control her disability rather than let it control her,” Kathleen said.
“The Hospice needs to raise huge amounts of money every year to continue providing these services to children like Seanain and I really hope that people can support the Hospice and make a donation of whatever they can afford this Christmas.”
Kathleen is hoping that 2020 will be a healthier year for Seanain following her surgery in December. Heather Weir, Chief Executive at Northern Ireland Hospice said: “It costs £15.5 million each year for Northern Ireland Hospice to provide high level palliative care and support to people of all ages across Northern Ireland, in their homes and in our specialist facilities.
“Only 30% of that is received through statutory funding which means we rely on fundraising efforts for the remaining £11 million.”
“I hope that raising awareness of the breadth of services we offer at Hospice, will encourage people to make a donation which can go towards care for children with life-limiting conditions such as Seanain.”
For more information visit www.nihospice.org