Northern Ireland

Parents of Ellie Nicholl (8) who died of rare condition to offer respite for other families

<span style="font-family: Arial, sans-serif; ">Ellie Nicholl (8) died in March from a rare neurological condition known as H-ABC syndrome. A new charity initiative has now been set up in her memory</span>&nbsp;
Ellie Nicholl (8) died in March from a rare neurological condition known as H-ABC syndrome. A new charity initiative has now been set up in her memory 
By Gareth McKeown

THE parents of a Fermanagh child who died from a rare medical condition are to keep their daughter's memory alive by providing free respite care for bereaved families.

Ellie Nicholl (8), a P4 pupil at St Patrick's Primary School, Mullanaskea, outside Enniskillen, died on March 9 after a long battle with the progressive condition known as H-ABC Syndrome.

It affects just one in 318 million people and at the time of her diagnosis in 2012, Ellie was the first sufferer in Ireland and one of just 22 in the world.

Parents Ciara and Billy officially launched 'Ellie's retreat' yesterday on what would have been their daughter's ninth birthday.

The aim is to provide a safe haven for families who have also lost a child and to keep Ellie's memory alive.

A fundraising drive will provide a static mobile home in Castle Archdale in Fermanagh to allow families a quiet setting to help come to terms with their grief.

“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," Ciara Nicholl said.

“Ellie’s Retreat will offer a place to escape and have some anonymity, space and time together with the other members of the family. It will hopefully be a step forward in the healing process."

Pictured before their charity cycle from Enniskillen to Hook Head, Co Wexford are Ellie Nicholl&#39;s uncles Nigel Sweeney and Jos Wukics, along with family friends Ian Luckett and Mick O&#39;Brien. Ellie&#39;s father Billy (second from right) will drive the support vehicle
Pictured before their charity cycle from Enniskillen to Hook Head, Co Wexford are Ellie Nicholl's uncles Nigel Sweeney and Jos Wukics, along with family friends Ian Luckett and Mick O'Brien. Ellie's father Billy (second from right) will drive the support vehicle

The deposit for the mobile has already been secured and the remaining £20,000 to purchase the site will come through fundraising.

Two of Ellie's uncles, along with two family friends, began a 290-mile cycle from Enniskillen to Hook Head, Co Wexford on Tuesday with all proceeds going towards Ellie's Retreat.

To support the charity or for more information see facebook.com/EllieNichollsPage/