TO be told you have an incredibly rare bone disease at just five years old is a hard enough start to life.
But for Sally Nagle, from Montenotte, even worse was to come.
As a result of her illness, she suffered chronic kidney failure at age 14 which was so bad, her body went into a cardiac arrest.
Then she underwent a kidney transplant, an event which signalled a turning point and the start of a new beginning for her.
Now aged 26, Sally’s life is back on track and she is planning an event to raise funds for the Irish Kidney Association later this year.
“My challenges are not going to stop me from doing certain things that I want to do,” she says.
Sally is the only woman in Ireland to have been diagnosed with Idiopathic Multicentric Osteolysis Syndrome (IMO), an incredibly rare skeletal disorder which causes sufferers to develop hard tissues instead of bones in some parts of their bodies.
She was five years old when doctors in England diagnosed her with IMO and to this day, she remains the only person diagnosed with the disorder in Ireland and the UK.
Doctors told Sally’s parents, Sabina and Ken, who have six children, that she might develop kidney failure “later in life”, but later came early for Sally and she was barely a teenager when the organs began to fail, in August, 2006, while she was on a family holiday.
“It was so extreme that I had already built up fluid in my heart and my lungs,” she says.
Sally was so sick that a simple procedure of putting a dialysis tube into her body sent her into cardiac arrest.
Luckily, she survived and after two years of life hooked on a dialysis machine, spending up to ten and a half hours a day on it, she finally got that life-saving phone call for a kidney transplant a decade ago.
Sally says she had a dream of getting the call, two nights before it happened.
“I told my mum and dad that I had a dream of us getting the call for the transplant and they told me not to think about it too much because if it didn’t happen, I’d be sad,” she recalls.
“When I went up to get the transplant, I told the story to the nurse who was putting me to sleep, and she told me to dream about lotto numbers. I said that ‘This is like winning the lotto for me’.”
This July will mark the 10th anniversary of that fateful day.
When I ask Sally what has changed in her life, she gives me a big smile, indicating that her life has changed for the better.
“A lot has changed because it took me a long time to adjust to the transplant, and I’m able to do more than I was able to do five years ago,” she says.
One significant change in her life was her return to college.
Sally, who got four As, two Bs and one C in her Junior Certificate at St Aloysius School despite the disruption to her life, said: “I went back to college to do Events Management after I did Administration for two years.”
Her career dream is to become an event organiser and she will be putting her skills to the test this summer by throwing the Gift of Life Ball, a fundraiser for the Irish Kidney Association and a celebration of the 10th anniversary of her transplant.
Pat O’Sullivan, organiser of the Cork Branch of the Irish Kidney Association, says that they are badly in need of such events.
“There are so many people waiting on the transplant list, so raising awareness and having a conversation about organ transplant is very important,” he says.
Marlese Walsh, a volunteer with the Irish Kidney Association and mother of a 16-year-old kidney transplant patient, thinks raising awareness about Cork children with kidney disease is especially crucial.
“There is no paediatric kidney transplant service here in Cork, so if you have a kidney disease there is a one-stop shop in Dublin’s Temple Street Hospital,” she says.
Marlese says the entire process of taking her child to Dublin and bringing him back to Cork takes up 10 hours of their time.
“The appointments are very frequent post- and pre-transplant, so there is an awful lot of travelling.”
“The formative years of childhood can be lost and severely disrupted by all that travelling.”
However, Marlese feels optimistic about the HSE’s promise of hiring paediatric nephrologists for Cork University Hospital’s children’s ward.
Meanwhile, Sally is trying to speed up developments like that by holding the Gift of Life Ball this September.
She is also honouring the memory of her donor. “My kidney donor was a deceased donor, so I don’t know them, but I send a card to the family every year,” she says.
Normally, organ donors and recipients remain anonymous to each other, so Sally has to send the card through the hospital.
“I write to them about all the things I am able to do since receiving the transplant,” she says.
In 2017, 98 Irish families donated the organs of their deceased loved ones.
Since the transplant, Sally has been able to pursue her passion for music as well and has enrolled in a voice training course at Cork’s Voiceworks studio.
Daring herself to perform in front of an audience has helped her to become more confident.
Pat O’Sullivan says Sally has been in touch with the branch and they are happy to lend her a hand in organising the event.
All volunteers at the Cork branch of the Irish Kidney Association are hoping the event will highlight their issues and compel the HSE to provide better services for kidney transplant patients in Cork.
The Gift of Life Ball takes place at Cork City’s Clayton Hotel on September 22.
For tickets and sponsorships, contact Sally through firstname.lastname@example.org
You can see a clip of Sally Nagle singing Don’t Worry About Me on Youtube, published by Voiceworks Acoustic TV.