SEVEN-year-old Ellie Nicholl may be battling a slow progressive neurological condition.

But after 10 months spent in and out of intensive care and high dependency units both here and in mainland UK, she is determined to get back to mainstream education.

Ellie was born with a rare condition known as H-ABC (Hypomyelination with atrophy of the basal ganglia and cerebellum) Syndrome.

At the time of her diagnosis in March 2012, there were only 21 other people in the world known to suffer the same condition.

Requiring 24-hour care, Ellie’s motor skills and speech have decreased over the years.

It’s a heartbreaking reality for her devoted parents, Billy and Ciara and brother Arran.

But when news came this summer that doctors in America had discovered the faulty gene that causes H-ABC, the family were determined to focus on raising money to help fund research for treatment or a possible cure.

So far families affected by H-ABC have donated $10,000 to the medical research.

For Ellie and her family, the fundraising still continues.

Having benefitted from respite at the local Children’s Hospice at Killadeas, they have resolved to split any money they now raise between the local charity and the medical research in America.

When Ellie, who will celebrate her eighth birthday next month, was born there was no immediate indication that anything was wrong.

“You are born with H-ABC but the symptoms don’t show until later on down the line,” Ciara explains.

In Ellie’s case, this wasn’t until she was around two-and-a-half to three years old.

“We had noticed little things prior to that, though,” Ciara adds, “But you never want to think there is anything wrong with your child.” According to the loving mum, while Ellie reached all her milestones, she didn’t take her first steps until she was 19 months old.

“She would have cruised around but she didn’t step out on her own until a lot later.

“We also noticed that she had a wee turn in her eye. Her speech didn’t really develop that well and she struggled with her co-ordination.

“It was just wee things that as a mother raises your concern.” The fact that Ellie didn’t have a health visitor after the age of six weeks old also made picking up on the subtle signs and symptoms difficult.

“A lot of it was just down to me,” says Ciara, “I was basically comparing Arran’s progression with hers and I thought she was following suit.” Ciara recalls how the family had to “fight” for two-and-a-half years before Ellie was finally diagnosed with her condition.

“In the end doctors from here sent her MRI scans to a professor in Holland.

“Through our own research, we made contact with other families around the world,” she says.

After the diagnosis, Ellie and her family had to come to terms with the cruel uncertainty that the condition brings.

“When she was diagnosed, Ellie was the twenty-second person in the world known to have H-ABC -- the condition is that rare,” Ciara explains.

“So we really don’t know what the outcome is. “Each day we just have to be hopeful.

“Although we had to fight for her diagnosis, and although Ellie didn’t have a health visitor after six weeks, we have a great team now between her community nurse and the doctors.” Ellie’s condition has slowly taken away her independence.

“She can’t do anything herself at all,” says Ciara, “She used to be able to feed herself finger foods and she would have had five to six words.

“But now she has lost all her speech and her mobility is gone too.

“The hardest thing about all of that is Ellie is 100 per cent clear in her mind. She is very smart and intelligent. So it can be very frustrating for her. She can get annoyed and she can get upset.

“It is hard.” Suffering from a secondary condition, Dystonia, which means she struggles to control her movements, Ellie and her family had been making trips back and forward to London last year in the hope of getting deep brain stimulation.

“It is like a pace-maker for the brain to stop her excessive movements,” Ciara explains, “She went for the operation and ended up spending seven weeks over there in a high dependency unit.” Ellie’s body rejected the deep brain stimulation, and when doctors discovered she was suffering from an infection as a result, the decision was taken to remove it.

“The last 10 months have been particularly hard,” says Ciara, “She was transferred back here and ended up in the intensive care unit in the Royal Victoria Hospital three times.

“But we have been home for the last three weeks which feels like a miracle.

“It’s great having her home, for us and for Arran too.” A pupil at St Patrick’s Primary School, Mullanaskea, Ellie is hoping she can return to class soon.

“It’s been a difficult time for all of us but as a parent, you will do anything for your child,” says Ciara.

The Nicholl family are now hoping to raffle a signed Fermanagh GAA jersey, presented to them by County player, Conall Jones.

Two All-Ireland match tickets have also been donated to help the family raise money.

And the family are in the process or organising a fundraiser in the Westville Hotel, Enniskillen on October 30.

For more information on Ellie’s story or the family’s fundraising, go to: www.facebook.com/EllieNichollsPage.