It’s the festive season and Clare Stace, 43, is doing what she loves. Gracefully strutting, looping, and parading through the excited audience on 90cm high-performance stilts. As she stimulates the imagination, inspires joy and offers an engaging, playful interactive experience for all ages, you would never know she has a chronic disease or the major challenges she has faced.
Clare has cystic fibrosis she also had a double lung transplant just over a year ago, which saved her life.
Growing up with cystic fibrosis
Clare was born with cystic fibrosis, a genetic disorder that primarily affects the lungs and digestive system. A faulty gene causes the lungs and intestines to produce thick and sticky mucus. This causes weakened organ function, recurrent infections, and organ damage.
In Australia, one baby is born with cystic fibrosis every four days. The median life expectancy is under 50. There is still no cure.
Living with cystic fibrosis can be a lot for anyone to handle. Clare felt that she never had a break from it, not even on Christmas day.
“As a child, I would have daily nebulisers and physiotherapy. I was absent from school a lot. My clothes would rot, and my shoe buckles would rust due to the excessive salt in my sweat.
“In my teens, I was more interested in discussing death than boys, clothes and make-up. As I approached my twenties, I questioned my place in life and thought I would die before my 20th birthday.”
As a child, I would have daily nebulisers and physiotherapy. I was absent from school a lot. My clothes would rot, and my shoe buckles would rust due to the excessive salt in my sweat.
“In my teens, I was more interested in discussing death than boys, clothes and make-up. As I approached my twenties, I questioned my place in life and thought I would die before my 20th birthday.
Christmas is my favourite time of year
“My view on life changed as I graduated high school and I fell in love with performing. I went on to study theatre at university. It was there I found joy in stilt walking.
“As a stilt performer, Christmas is my favourite and busiest time of year. I love hand-making the creative costumes and bringing so much joy and happiness to people through my magical characters like the ‘Angel of Lights’ and ‘Cheeky Christmas Elves’.
“Seeing the wonder and smiles on people’s faces makes my day.”
Receiving the gift of life – double lung transplant
Clare’s cystic fibrosis soon started to impact on her love of entertaining others.
“Eventually I had to rely on my husband to help me into my stilts. I also bought lighter stilts so I could keep on performing despite feeling fatigued.
Each year, I needed to adjust my stunning festive costumes as my rib cage continued to expand from the disease.”
Clare’s passion for performing and entertaining had to be put on hold in 2017.
Despite her best efforts to keep fit and never give up, her health rapidly declined.
“I needed a life-saving double lung transplant.
“It’s major surgery, especially for someone who is so unwell. I worked hard to improve my health so I would be accepted for surgery. I went to the gym three times a week with my oxygen tank, increased my weight and focused on my mental health too.
“I was one of the fortunate ones as I was on the waiting list for only two months when I got ‘the call’ on 25 April 2019.”
Every day is a gift
“I believe every day is a gift and that my positive mental attitude helped me every single day. But I still had challenges to face. My body could
still reject the lungs at any time. When I left the hospital it still hurt to breathe, I spent most of my time sleeping and I couldn’t leave the house
socially for more than two months.
“In time, my lung function returned to 100 per cent and in October 2019 I returned to my love of stilt performing.
“You’ll be able to see me at this year’s City of Perth Christmas Lights Trail in the lead up to the festive season. I can’t wait to see you there!”
“I’m one of the fortunate ones as I received a life-saving double lung transplant. Many will not survive because research into lung disease, including cystic fibrosis, is globally underfunded compared with other chronic health conditions.
“You can change this. It is only through your support and the great work that researchers at the Institute are undertaking that we can improve the diagnoses and implement new, targeted treatments for cystic fibrosis.”