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'Beautiful angel' Ellie Nicholl (8) loses her long and brave battle with rare brain disorder

By Cate McCurry

Published 10/03/2016

Ellie Nicholl
Ellie Nicholl
Ellie Nicholl with parents Ciara and Billy and brother Arran

A brave little Co Fermanagh girl who has died from a rare brain disorder has been described as a "beautiful angel" who is now free from her illness.

Eight-year-old Ellie Nicholl 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, a pupil at St Patrick's Primary School in Mullanaskea died yesterday, just weeks after the Nicholl family were given the heart-breaking news her illness was terminal.

Her parents, Ciara and Billy, and brother Arran, raised more than £30,000 through a massive campaign they launched last year to raise awareness of her illness.

Her condition affects just one in 318 million people. She also had dystonia, which caused her body to move uncontrollably.

Ellie was diagnosed with H-ABC syndrome in March 2012, and at the time was one of only 22 people in the world with the condition.

Following her diagnosis, her parents undertook round-the-clock care for their only daughter, who they described as their "wee dote" and "one in a million".

Her dad, Billy, suffered a heart attack last October and spent several weeks recovering in hospital. However, the family continued to raise money for research to find a cure for the disease.

Recent ground-breaking work in America identified a faulty gene responsible for the disorder, which gave the family a glimmer of hope.

Ellie's family posted on their Facebook page: "This morning our beautiful angel Ellie got her wings after a long and difficult fight in this earthly world.

"We know that she is now free and bound no more by her illness and is already looking down on us.

"Memories of Ellie, her beautiful smile and tremendous courage will keep us brave in the journey ahead without her."

When Ellie was born, it seemed she was just like any other child, but within two years her parents realised something was wrong.

After Ciara and Billy were dealt the devastating blow about their daughter's future, they campaigned tirelessly to fund research.

Family members are due to take part in the Liverpool Half Marathon this Sunday for the Ellie Nicholl Research Fund.

First Minister Arlene Foster also paid tribute to the young Fermanagh girl.

She said: "This morning I visited the new Mencap facility in south Belfast, where young children with learning disabilities are being so well looked after.

"I was really pleased to see the young people and the joy in their eyes. Then I heard this very, very sad news. No more pain."

Ellie's bravery and difficult battle touched the lives of thousands of people, and hundreds of tributes were posted on social media following her death.

One Facebook user wrote: "RIP Beautiful wee angel. Heaven is a better place for having you there. You may only have been here for such a short period of time, but you touched so many hearts with your smile."

Belfast Telegraph

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