AFTER seven years of raising awareness about Cystic Fibrosis (CF), Bassendean author and librarian Sandi Parsons is continuing to share her experience of living with the disease through her second book.
The 45-year-old is taking part in a 31 Days of CF campaign and Cystic Fibrosis WA’s (CFWA) 65 Roses Day on May 25.
At 37 years of age, Ms Parsons received a lung transplant on May 27 in 2011, which marked the start of her involvement with CFWA.
Her first children’s book, The Mystery of Sixty-Five Roses is an educational and awareness-raising tool.
She is currently working on a second book based on a strong character with CF – a figure she missed in her childhood.
She said she had been documenting her experiences every day on social media this month.
“Instead of sharing facts and figures, I’m sharing my personal journey with CF, and all that encompasses,” she said.
“Increased awareness helps with funding, which goes towards both support and research.”
At the time of her transplant, 10 per cent of her lungs were working and she only had weeks left to live.
“The beginning of 2011 saw me on full-time oxygen, I was no longer able to work and was virtually housebound,” Ms Parsons said.
“A transplant is a trade, not a cure, so while I still have significant health issues, it doesn’t compare to the regime that CF demands.
“I have more time and energy, I was able to return to work, I’ve travelled, I have a lot more time for writing than I did pre-transplant and my transplant allowed me to see my son grow up.
“There is a very simplistic pleasure in waking up and knowing that I can take a deep pain-free breath without struggling.
“My transplant has meant so much more than a second chance, it’s allowed me to realise my potential and achieve goals I could only dream about before and it’s only possible because someone had the generosity to say ‘yes’ to organ donation.”
CFWA is aiming to sell 15,000 roses to support research into CF – the most common genetically acquired, life-shortening chronic illness affecting young Australians.
There will be roses for sale at Altone Park Shopping Centre in Beechboro.
For more information, visit https://www.facebook.com/farawaynearby and @sandi.writes on Instagram.