Courageous Joanne, 16, waits for a new heart
'It's hard, morally -- I know someone has to die for me to get a transplant'
SPARE a thought at Christmas for those far from home. And this year the holiday season has been particularly tough for Joanne Connolly.
The 16-year-old from Kilkenny spent the festive period in Our Lady's Children's Hospital, Crumlin, awaiting a call for a lifesaving transplant operation.
But after a three-and-a-half- month wait, Joanne and her mother Elaine are hopeful that this new year will bring their dreams of a new heart and new lease of life for the transition year student, even closer.
"I got really sick over the summer," Joanne, who was diagnosed with restrictive cardiomyopathy at just 13 years of age, told the Sunday Independent. "I was stable up until summer -- then I got a virus and got really sick. I was too tired to get out of bed or eat."
Joanne has spent the last few months at the newly renovated Children's Heart Centre in Crumlin, a ward which was built entirely from donations to the Fix Crumlin fundraising appeal run by the Children's Medical and Research Foundation.
Joanne's father passed away when she was just five years old from a similar heart issue; her mother, Elaine, is staying at the Ronald McDonald House in Crumlin, which provides accommodation for the families of children who are seriously ill in the hospital.
"I didn't even realise it was Christmas," Joanne smiled. "It just really doesn't feel like Christmas and in a way that's kind of a good thing because then I don't feel like I'm missing out on anything.
"I think it will all just be so quick," she said of her impending transplant procedure. "There's only a four hour window between when you get the call and when you have to be in the operating theatre and they don't do paediatric cardiac transplants in Ireland, so I'd have to go to Great Ormond Street Hospital with the Air Corps."
Joanne is firmly focused on the future. Her bag is packed and ready to go and after her recovery, she plans to fulfil her dream of becoming an opera singer by studying for a degree in vocal performance.
"I love Maria Callas," she said. "I'm studying with Virginia Kerr of the Royal Irish Academy of Music. She comes to the Ronald McDonald House to give me lessons. It's like my time. I forget about everything else when I sing."
While Joanne finds the reality of waiting on a donor harrowing, her experience has given her an underst- anding and appreciation of life beyond her years.
"It's really difficult," she admitted. "I'm really finding it hard, morally. I just can't get my head around it that someone else has to actually die under horrible circumstances for me to get this heart. I just can't even comprehend that part of it, but my life depends on it. It really does, and my whole future."
"Before this, I was your average 16-year-old," Joanne added. "I never thought about anything; I never thought about sick children. I was just totally selfish, but after coming up here, I've realised there's so much more to life, you should never take anything for granted."
The next project for the Fix Crumlin appeal is the severely outdated Outpatients' Centre. However, due to the recent controversy at the Central Remedial Clinic, donations have dropped off this year.
"Without a shadow of a doubt there has been a very strong impact across the sector," Edel O'Malley, director of development at The Children's Medical and Research Foundation, said.
"If anything good comes out of this, it will be a much better and clearer understanding and education around what charities or not-for-profits do," she said.
"I think also that we, as a sector, will get better at telling our donors and our public what it is that we do with their money," she added.