Ciara and Billy Nicholl, who live at Cradien, outside Enniskillen, are parents to seven-year-old Ellie, who has a slow progressive neurological condition known as H-ABC (Hypomyelination with atrophy of the basal ganglia and cerebellum) Syndrome.

The condition means that Ellie is unable to walk or speak and has bad dystonia; uncontrollable movements of her body.

At the time of her diagnosis on March 16, 2012 Ellie was only the 22nd person in the world with the syndrome and remains the only patient in Ireland. Since that day parents Ciara and Billy have undertaken 24 hour care for little Ellie, with the last 10 months particularly difficult. To help with her dystonia Ellie underwent a surgical procedure known as Deep brain stimulation (DBS) in October, but the treatment did not have the desired effect, with Ellie spending periods in the high dependency unit and intensive care.

The DBS was then removed and Ellie, whose hip was displaced by 40%, had a correctional operation on her leg and a peg inserted for her to feed.

Ellie has been home now for two weeks and on Sunday afternoon her story reached the far side of the world after her mother posted on Facebook about a Fermanagh jersey presented to her from county player Conall Jones.

In the post Ciara explained that the faulty gene has been discovered for Ellie’s condition and revealed her plans to raise money to fund treatment and a cure.

“I have always raised money for the Hospice because they have given us wee breaks to help with Ellie, but now this is the big thing. They have found the faulty gene and they’re actually starting to do research in America to find a cure and treatment for H-ABC.”

To date Ciara’s post has been shared almost 400 times, with 181 likes and more than 30 comments. Not to mention private posts from as far as America and Australia.

“Oh my God it’s been phenomenal. I went to bed last night (Sunday) and I use my phone for an alarm in the morning and it was pinging all night, it never stopped. Locally there’s all these people offering their services, between discos and organising events. Obviously it’s fantastic, because we’re 24/7 with Ellie so it’s going to be quite difficult to get something organised.

“It’s unreal. Someone is even offering up a marble bathroom. Someone I knew from university,  they’ve offered to put one up for raffle, as they work at a granite company.”

She continued, “The support that we’re getting from just putting up a post about a Fermanagh top is just mad. I can’t let it go now, we’re going to get something organised in the near future.”

Ellie’s parents describe her as a “wee dote” with a big heart, along with a love for Mrs Brown’s Boys and hope the popular St Patrick’s, Mullanaskea pupil will be back in class in September.

“She has a 100% understanding of everything and is very smart. She is happy wee girl and anybody who meets her would just say what a big heart she has. She’s so strong considering all she has been through.”

She added:

“It’s progressive, we take each day as it comes, we’ve learnt to do that, but it’s been hard. We just let her enjoy life. She enjoys school, she enjoys her friends, she enjoys meeting people so that’s what we aim to do.

“You do anything for your child, I know it is a very rare condition, but you have to hope. We take every day as it comes.”