Saturday 21 October 2017

'The world doesn't treat Amiee with respect - and that's the case with most people with special needs' - Mum of girl (14) born with mystery condition

Amiee O'Loughlin is a fighter. Her mother, Ann, tells our reporter that in spite of all her daughter's medical problems, this very special girl of hers lives life to the full, and is one of MMA star Conor McGregor's most loyal fans

Amiee O'Loughlin with her mother Ann. Photo: Conor McCabe Photography
Amiee O'Loughlin with her mother Ann. Photo: Conor McCabe Photography

Joy Orpen

Amiee O'Loughlin is something of a medical mystery. No one really knows what has caused her extremely challenging health issues. To date, this feisty teenager has been through so much, that it's hard to understand how she could have survived it all. But survive she has.

It all began when her mother Ann, who is from Co Clare, met Stephen Ginty, a Mayo native. In time, she moved to Cluain Na Ri, near Ballina, to be with Stephen. "We live in a lovely part of the country," she says. So, they were delighted when Ann fell pregnant. However, a scan at 36 weeks sounded warning bells.

"They could only see one kidney," says Ann. "Apart from that, they didn't say much. But I knew in my heart something was wrong." On January, 2003, Amiee finally made her appearance at Mayo University Hospital in Castlebar. "She wasn't breathing and was immediately rushed to the special baby care unit," says Ann. "And that's when a long medical mystery began to unfold. From that moment on, she was in crisis."

Amiee was born with a large haematoma on her head which doctors feared might be a tumour, but this proved not to be the case. In addition, her blood-sugar levels were all over the place, and she couldn't keep her feeds down. "For the first two days, it was touch-and-go," says Ann. "She had so many things wrong with her that some of the staff wrote her off. But we bonded with her straight away." At that point, Ann and Stephen didn't even have the simple pleasure of cuddling their precious infant, as her heart would race dramatically when anyone picked her up.

Once she was reasonably stable, Amiee was taken by ambulance to The Children's University Hospital, Temple Street, Dublin. And so, began a relentless saga; one which continues to this day.

In time, it was discovered that apart from her chronic feeding problems, erratic blood-sugar levels and racing heart, Amiee's thyroid was "deficient", her kidneys were misshapen and she was suffering from hip dysplasia. "They did every kind of test, but they were never able to give it [the overall condition] a name, and that's still true," says Ann.

When Amiee was two months old, Ann and Stephen were taught how to care for their fragile child themselves. "We learned fast, because we wanted to get her home," Ann explains. Stephen gave up work so he could help. "Aimee had to be fed around the clock," explains Ann. "Her sugar levels had to be constantly checked, her hips caused problems, and she was on a lot of medicines."

When Amiee was a year old, she had surgery to tackle the hip problems. But shortly after, she developed scoliosis, which became so aggressive it caused full curvature of the spine, which has required multiple surgeries over the years. Complicating matters even further was the fact that she had developed adrenal problems and had to be put on steroids.

"She is now steroid dependent," says Ann, "and that requires very close monitoring." She also has severe breathing problems, caused, in part, by the curvature of her spine and by low immunity. This requires constant physiotherapy, suctioning, and the use of a nebuliser and a positive airway pressure (PAP) machine.

In July, 2013, Ann and Stephen consented to Amiee having extremely dangerous spinal surgery. "We risked losing her in theatre, but there was also a good chance we'd lose her anyway - her lungs were now so compromised," says Ann. "So, we made the heartbreaking decision to go ahead. The day of the surgery was the longest day of our lives."

When Amiee finally emerged from theatre, she was on a ventilator and had tubes everywhere, but she was still alive. She was expected to spend a month in hospital, but, in true Amiee style, she rallied and was home in eight days. "She has strengths others could only dream of," says Ann. "She is a total inspiration to us all.

Amiee, like most teenagers, loves a good party. The Make-A-Wish organisation threw her a big bash for her 12th birthday at the Great National Hotel in Ballina. She was whisked there in a limousine and given VIP treatment. Amiee enjoyed every second, with her biggest fans - her parents - by her side.

Although she is a wheelchair user, Amiee can take a few steps. She communicates using Lamh, a manual sign system, and Irish Sign Language. She learned both at St Nicholas, a special-needs school in Ballina, which she attends when she is well enough. "She talks to us about everything," says Ann. "She lives life to the full and is always making plans. She's definitely brighter than the average 14 year old. I don't think the world treats her with the respect she deserves. I think that's the case for most people with special needs."

Amiee and her parents were in Dublin recently at the invitation of Bumbleance, an ambulance service for sick children. In 2015, Amiee began using their vehicles to get to and from Temple Street. Ann says that Amiee's chronic lung condition, compounded by her scoliosis, made it really uncomfortable for her to travel in the family vehicle. "She dreaded those trips," she says.

But now, when Amiee travels by Bumbleance, she can stretch out comfortably, watching videos or playing computer games, while fully qualified paediatric paramedics deal with her medical needs. "They are very supportive," says Ann. "Sickness is very isolating. But the Bumbleance team has changed all that. Amiee is smitten by them, and her magical taxi. It is also very reassuring for us to know the paramedics are with her, as she can suddenly become quite ill."

Watching Amiee at the Bumbleance event, it was clear she was enjoying every second. She was beautifully dressed, and like all teenagers, she had made sure her hair and make-up were perfect. Amiee loves country music, a Mayo-based DJ called Pat Boyle, and the mixed martial arts star Conor McGregor

Her greatest hope is that one day she will meet McGregor. "She gets really excited when his fights are on," says Ann. "One of the things Amiee has taught us is that nothing is impossible."

To donate to, and for more information about, the Bumbleance service, see bumbleance.com

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