THE death of a child turns lives upside down and the simple pleasures of life, such as having a holiday, are far from the minds of those left behind. However, thanks to a charity set up in memory of eight-year-old Ellie Nicholl, who lost her fight to a rare progressive neurological condition last March, 25 families who have been bereaved have been given the opportunity to grieve in peace and enjoy a touch of normality during a break in the Fermanagh lakelands this summer.
Ellie's Retreat is a static caravan at Castle Archdale, on the shores of Lough Erne, set up by Ellie's parents Ciara and Billy to keep their daughter's memory alive by providing a free respite break for bereaved families, giving them "anonymity, space and time together" after the loss of a child.
Ellie was born with H-ABC Syndrome, although she wasn't diagnosed until she was almost five. Symptoms tied to H-ABC usually begin in early childhood and vary in severity; they include movement difficulties and delay in mental development.
"Ellie met her milestones as a baby and was crawling and pulling herself up at 11 months, but didn't take her first step until she was 19 months. It took a further two and a half years until she was diagnosed, with an MRI, sent to Holland, showing she had H-ABS," Ciara says of her daughter, who attended St Patrick's Primary School in Mullanaskea.
"Ellie had a very harsh version of it and had deep brain surgery in London. However, she was a very intelligent child and sadly knew what was happening to her."
At the time of her diagnosis in 2012, Ellie was the first sufferer in Ireland and one of just 22 in the world. Now due to advances in genetic testing there are approximately 100 cases recognised.
Through online research the family managed to make contact with the few other families of those affected and helped to raise funds for the Foundation to fight H-ABC charity in the United States, which is supporting research into gene therapy treatment to stop the degenerative effects of the disease.
Ellie lost her brave battle for life in March 2016, and while her family will continue to support research into H-ABC, they wanted to do something in her memory.
"I fell to pieces after Ellie's death. There are no words to explain the grief after the death of your child, whether expected or not. The pain and heartache felt are immense. Numbness and severe anxiety become a part of everyday life. There is a real fear of going outside the door and meeting people having no explanation for these feelings," says Ciara.
It was during a short break at Alice's Escapes in Cumbria, a charity which also offers respite breaks for families, that the idea for Ellie's Retreat was born.
"It really helped us, to get away together to a place where no-one knew us and where we could cope with our anxiety and grief in a tranquil setting. Life just seemed a wee bit normal. The fear and anxiety lessened, even if it was just for those few days," Ciara says.
"When we returned we did some research into what was available in Ireland for bereaved families and while there were a couple of places which provided bereavement counselling, there was nothing that was simply a holiday that got the family away."
The Nicholl family have been overwhelmed by the support for their venture. In just five weeks the £25,000 needed to purchase the caravan was raised by local donations. In addition, local businesses have helped the family kit out the retreat with outdoor decking, duvets, tea and coffee, toastie makers and so much more. Even country music star Nathan Carter, who is based in Enniskillen, got behind the idea by becoming Ellie Retreat's official ambassador.
"If the weather is good, there is nowhere nicer to go in the world than Fermanagh. The park itself offers so much including a shop, bar, play area and sports options. We provide bedlinen, towels, a welcome pack containing food essentials and a small token of an angel for parents and something for the siblings."
As well as helping others, which will have annual costs of up to £4,500, planning and managing the retreat has helped the Nicholl family cope with their loss, including Ellie's doting big brother Aaron who is "very proud" of it and regularly helps with grass cutting and general maintenance.
And what is Ciara's advice to other parents on how to cope with the unthinkable death of a child?
"The grief will never go away and the pain is always there, but if you can get something to focus on, it helps. For us that's about the retreat and keeping Ellie's memory alive.
“On what has been the most difficult year of our lives, Ellie’s Retreat fills us with pride; it makes us smile, it gives us a purpose and we know she is looking down and smiling. We are privileged to be helping others in Ellie’s name; she was an inspiration to us all and will never be forgotten. Ellie's beautiful presence will always be with us and that smile never forgotten."
One family who benefit from a short break at Ellie's retreat is that of Moira couple Karen and Ben Bovis, who spent some quality time with their three children following the loss of their younger brother Elijiah; he died at just five months old, having been born with a severe heart condition.
"Fermanagh was beautiful. We had a great family time – relaxing, reconnecting, remembering and retreating," Karen says.
:: For further information visit Facebook.com/EllieNichollsPage. Donations can be made at mydonate.bt.com/events/elliesretreat/349450.
