Belfast Telegraph

Mother of tragic Co Fermanagh girl Ellie Nicholl 'humbled' by MBE

Ellie and Ciara Nicholl
Ellie and Ciara Nicholl
Lauren Harte

By Lauren Harte

The mother of a Co Fermanagh girl, who died from a rare brain disorder three years ago, says she is humbled after being awarded an MBE for services to bereaved families in the UK and Ireland.

Eight-year-old Ellie Nicholl from Enniskillen is believed to have been the only child in Ireland to have suffered from the rare progressive neurological condition known as H-ABC syndrome, which left her unable to walk or speak.

The youngster died in March 2016, just weeks after her parents, Ciara (48) and Billy (53) and older brother Arran (17), were given the heart-breaking news her illness was terminal.

Following Ellie’s death, Ciara and Billy founded Ellie’s Retreat, a charity which offers free respite breaks for families who have suffered the loss of a child.

Located at Castle Archdale caravan park, Ellie’s Retreat is a static mobile, providing all bed linen, towels and a small welcome pack of groceries.

Since opening in March 2017, Ellie’s Retreat has welcomed 86 families from across Ireland and the UK between St Patrick’s Day and Halloween each year.

Earlier this year Ciara was nominated for a prestigious Pride of Britain Award which celebrates the achievements of truly remarkable people who make the world a better place.

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But she says her MBE was a complete and utter shock.

“As I often say to people, we don’t do this for recognition but it is an honour that someone has gone to the trouble of putting me forward.

“It’s a delight and it shows that Ellie’s legacy is still going strong,” Ciara told the Belfast Telegraph.

“We do what we do to remember our little girl and to help other families get through the dark days and for me it’s an honour. 

“Some of the families have left us and then gone on to do their own fundraising because they had such a nice time remembering their lost babies.”

With the fourth anniversary of Ellie’s death coming up in March, Ciara says the loss doesn’t get any easier.

“Ellie is always with us and we speak about her all the time so she’ll never be forgotten," she said.

“That how I know that Ellie’s Retreat helps so many other families who have lost a child.

“No matter what age you lose a child, whether they’re three months old or 23, you have lost your baby - it makes no difference as the pain is still the same,” Ciara added.

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