Niamh McCloskey was a regular teenager.
The 14-year-old Limavady girl loved her friends, Friday night movies with her parents, Sean and Fiona, her music and DVDs.
Niamh had suffered headaches and severe migraines last year. She rarely complained and even when she lost power down one side of her face, she took the prescribed medication and was back to herself within days.
On February 10th of this year, however, everything changed.
Niamh, a pupil at Loreto College in Coleraine, was about to leave for school with her big sister Sinead (18) when she collapsed. She lost power down her right side.
Niamh was rushed to Altnagelvin where, after an MRI, she was diagnosed with moyamoya by Dr. Mark McCarron.
Moyamoya, which is extremely rare, affects about one in a million Westerners but is more common in Japan. It leads to an irreversible blockage of the main blood vessels connected to the brain and causes strokes, seizures, numbness and migraine-like headaches.
It is not known what causes the condition.
Niamh was transferred to the Royal Victoria in Belfast before being moved to Great Ormond Street.
“Dr Ganesan at Great Ormond Street told us there were four arteries which carry blood to the brain and one was blocked, or ‘furred up’, and the blood was clotting,” Mrs McCloskey said.
Niamh was able to return home as she waited on surgery at Great Ormond Street. She went back to school for a couple of days, but it was just too tiring for her.
On Mother’s Day, Niamh took a bad collapse and was rushed to hospital by air ambulance. She had lost the power in her right leg and subsequently her right arm. The couple were told the surgery at Great Ormond Street had a 96 per cent success rate.
“Niamh took it all in her stride,” said Sean. “She didn’t complain. She was fantastic.”
Dr McCarron had come to visit her in London at the hospital.
“He couldn’t believe how well she had come on. He wished us well and said for us to come and visit him when we got home,” said Mrs McCloskey.
The night before the operation, Niamh and her parents watched a movie and enjoyed some treats, just like their regular Friday nights at home.
“She loved her DVDs and her music. She was a real movie buff,” said Mrs McCloskey. “Looking back on that night now, it breaks our hearts.”
The couple recalled their last words to Niamh before the operation.
“We gave her a kiss,” said Mrs. McCloskey. “I said ‘I’ll see you later pet’ and’ I love you’, and Sean said the same.”
While the operation itself was a success, Niamh’s condition worsened.
“She never really came out of the anaesthetic,” said Mr McCloskey. “They moved her to the high dependency unit and, that was it. She never spoke to us again from before she went in.”
Niamh subsequently took a massive stroke, and the family were told there was little hope.
“I asked what needed to happen,” said Mr McCloskey, “and I was told we needed a miracle, but I said, ‘You don’t do miracles’. Niamh was so sick.”
Niamh died from moyamoya at Great Ormond Street Hospital for Children in London on April 2.
In the 19 weeks since Niamh died, the couple say they have no choice but to get on with things for Niamh’s siblings, Sinead and Michael (10).
“Niamh was always here and she loved her Friday nights. She loved her DVDs. She had more than 70 DVDs and she loved her music, especially Kanye West. She was so good. You only had to tell her do something once and it would be done,” said Mrs McCloskey.
Mr McCloskey said his daughter never complained.
“Ask anyone who knows her. If you look at her school report there is a recurring theme from all the teachers - pleasant, always smiling, well mannered. At her primary school, Termoncanice, she won the ‘Sunshine Award’ for being so helpful to others. Niamh wouldn’t say a lot, but she had a real presence,” said Mr McCloskey. The couple say since Niamh died they have been humbled by the kindness and support from people who want to help.
The Niamh McCloskey Brighter Future Fund has been set up by Great Ormond Street Hospital and the McCloskeys. So far thousands of pounds have been raised through events including Niamh’s cousin, Marc Cudden from Maghera and his friends who ran the Belfast Marathon. Fiona and her sister Paula completed a 10k organised through Ballykinlar GAC, while some of Niamh’s friends will take part in the Colour Run in Belfast later this year. Niamh’s school held a Walk for Niamh in June.
Alex Boyle, a close friend of the McCloskeys over the past 12 years, has organised a charity night at Frank Owens Bar on September 12th, at 8pm.
“Myself and my friend David will be doing the Derry half marathon in Niamh’s name. I had asked Sean and Fiona about the charity night because people were asking how they could help, if they could do something,” explained Alex. “I’ve known Niamh since she was about two. She was amazing.”
Mrs McCloskey said while Niamh was a very private person, and would more than likely be mortified at all the fuss, she also believes her daughter would be very proud to think she was contributing to something in London to help other families. She said had Niamh recovered, the family would still have wanted to fund raise.
Mr McCloskey said Niamh received the best possible care at Altnagelvin, at The Royal and at Great Ormond Street.
“We couldn’t have asked for better, but all that takes money,” said Mr McCloskey. “This is a way to give something back and people have been fantastic. It’s very humbling.”
All funds raised will go towards The Niamh McCloskey Brighter Future Fund to help kit out a private room in Great Ormond Street Hospital for Children. The family say a donation will also be made to Altnagelvin where Niamh was first diagnosed.
Mrs McCloskey said the events organised give the family something to focus on.
“We have a lot of hurdles to overcome. Niamh’s birthday is on December 14 and we will have Christmas without Niamh. All this is helping us, and it will be nice to have something in her name. We have so many good memories of Niamh. There are no bad ones.”
Mrs McCloskey added: “We always said Niamh was too good for here. She was pretty well near perfect, but we have to believe God took her for the bigger picture.”
Anyone wishing to donate to The Niamh McCloskey Brighter Future Fund can do so online at www.justgiving.com/Niamh-McCloskey1/