Leanne Demers was born in Sydney and spent her childhood in the Sutherland Shire, close to beaches where she built sandcastles, ran and played in the ocean, breathing in the salty sea air and eating bright green bubble gum ice cream.
Born with Cystic Fibrosis (CF), Leanne spent her childhood learning to live as normal a life as possible, that life included physiotherapy, nebulisers and lots of tablets. Her earliest memories are of jumping on the trampoline – the best form of physiotherapy to shift mucous from her lungs.
CF was not a lonely life because her brother Glenn, two years her senior, sat with her every morning; he too had CF and followed the same treatment plan as Leanne. It helped to know that someone else knew what life with CF was like. Like a twin, when Glenn died of leukaemia at just fifteen, it felt like a part of her was gone.
One of three children, Leanne’s mum dreamt of having a little girl – pretty dresses, pink and lace, but Leanne was ‘dragged’ up by her two older brothers; she was a tomboy who loved her jeans and dungarees, water pistols and getting dirty.
Cystic fibrosis was a death sentence in 1971 when Leanne was born, and her mum was told her daughter would not live to go to school. Leanne beat all the odds stacked against her, thriving for many years before her health started to fail. She attended primary school and highschool, completing her HSC. She went on to study teaching at uni and graduated with a Diploma of Primary School Teaching.
Leanne was able to do casual teaching for a few years before she was offered a position teaching children with learning difficulties. She had found her niche in life and loved it – what a rewarding job.
CF, a progressive illness, meant that she had to stop teaching in 1995, but to keep her mind active she did private tutoring from home for many years.
Marrying her soulmate Jay in 2005 was like a dream come true – her knight in shining armour. Jay lived in Boston, USA. They met online in 2001. Jay soon became Leanne’s full-time carer. Leanne’s health got progressively worse, dependent on oxygen in her late thirties and struggling to do the simplest of tasks – brushing her hair, showering, walking from one room to the next in her small apartment.
Leanne spent every quiet moment she had reading and writing, developing a love for words from a very young age. Finding poetry in her teen years meant that she was able to release a lot of the emotions that came with chronic illness, her poetry expressing the sentiment she struggled to articulate. Writing became cathartic as she faced the word terminal and prepared for her demise.
In 2012 she received a double lung transplant. A new journey had begun. Leanne started to write, spending sleepless nights writing her thoughts down as she rode the roller coaster ride that was life with new lungs. Her decision to turn her thoughts into a book arose from the knowledge that no one knew what the transplant journey was like unless they had been through it. Leanne wanted her words to help others going through transplant, their family and friends. Wearing her heart on her sleeve, she portrays every emotion with beauty and compassion. This became one woman’s captivating insight into a double lung transplant world.