Ellie Nicholl
The Nicholl family and wider Fermanagh community has been left heart-broken following the death of little Ellie.
The brave eight-year-old from Cradien, outside Enniskillen, a former pupil at St Patrick’s Primary School Mullanaskea passed away on Wednesday morning, March 9.
She lived with a rare progressive neurological condition known as H-ABC Syndrome, which meant she was unable to walk or speak and also had dystonia, which caused her body to move uncontrollably.
Ellie’s grief-stricken parents took to Facebook to pay tribute to the “tremendous courage” of their young daughter.
“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. xxx”
A month earlier the family were told that Ellie’s prognosis was terminal after a long battle with the rare illness, which affects just one in 318 million people.
Following the news a huge outpouring of sympathies were expressed through social media for the “happy wee girl with a big heart”.
A representative from St Patrick’s Primary School, Mullanaskea led the tributes: “The Board of Governors, staff, parents and pupils of St Patrick’s Primary School, Mullanaskea, Enniskillen deeply regret the loss of our darling Ellie. An Angel in Heaven who will never be forgotten by the school.”
At the time of her diagnosis on March 16, 2012 Ellie Nicholl was only the 22nd person in the world known to have Hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC) syndrome and the only one in Ireland.
Since that day parents Ciara and Billy undertook 24 hour care for little Ellie, who they described as their “wee dote” and “a happy wee girl with a big heart”
In August 2015 the Nicholl family began fundraising to help raise awareness of Ellie’s condition and find a cure.
Since the fundraising campaign began a total in excess of £30,000 has been raised, including well over £10,000 at a special Halloween Fundraiser last year. In January £15,000 was donated to The Children’s Hospital in the USA who are undertaking research into H-ABC and the same amount transfered to the Horizon West Children’s Hospice.
In recent months Ellie spent more of her time in hospital, but before Christmas she enjoyed a dream meeting with the cast of her favourite television show, ‘Mrs Brown’s Boys’ on December 11 and was well enough to see her school play on December 17.
Speaking after the meeting in Belfast with the cast of ‘Mrs Brown’s Boys’ mother Ciara said: “It’s memories and something that she’ll always remember. She’s always loved Mrs Brown and the staff are still talking to her about it a week later. It was a wee wish come true for her to meet Mrs Brown.”
The largely attended funeral mass for Ellie Nicholl was held on Friday, March 11 in St Joseph’s Church, Cradien and was followed by interment at Cross Cemetery.
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