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“For most children, autumn was the start of footy season and spending time with family and friends. For my family, it signalled the start of the dreaded cold and flu season and potentially fatal infections for immune compromised children living with cystic fibrosis like me.” Peter Stewart
Looking back over their early years, most people remember adventures with friends, birthday parties and family holidays filled with fun activities.
But those precious childhood moments many adults take for granted didn't exist for now 57-year-old Peter Stewart.
By the time Peter was diagnosed with cystic fibrosis aged four and a half, the disease had already claimed the life of his baby sister, Christine, at only three weeks old. Instead of tales of school camps, climbing trees and playing ball games in the park, Peter lived his childhood in the shadows of a genetic condition with no known cure.
Cystic fibrosis is a genetic condition that attacks the airways and lungs causing frequent infections that impact the whole respiratory system eventually leading to respiratory failure. Cystic fibrosis also impacts heavily on the digestive and endocrine system causing problems such as malabsorption and diabetes.
Peter's childhood memories are of intense and painful physiotherapy sessions, taking a concoction of up to 80 tablets a day to manage his condition, and a palpable fear of hospital stays knowing he might get sicker while admitted due to limited infection control measures.
As Peter passed the then 18-year life expectancy and met his wife, Sonia, cystic fibrosis stole even more happy occasions. As their relationship grew, he had to explain that he may never father children. And, if he did, may never watch them grow up.
When I first told Sonia I had cystic fibrosis she said, “what’s that?”. Despite one in 25 people being carriers of the defective cystic fibrosis gene, like most Australians, Sonia knew very little about the disease.
Aside from missing out on a normal life that we can easily take for granted, living with cystic fibrosis is financially, emotionally and physically draining for patients of all ages and their families.
When Peter was first diagnosed, Cystic Fibrosis Queensland was in its infancy and there was relatively little known about the importance of exercise, effective medication and infection control. While there is still no cure, life expectancy of a sufferer today is just less than 40 years. However, many people born with cystic fibrosis still do not live past their twenties.
With thanks to donors, research, support and services have come a long way since Peter was first diagnosed in 1967. Cystic Fibrosis Queensland continues
to offer daily support and services to children and adults who rely heavily on airway clearance, oxygen concentrators and nebulisers to assist with medication absorption, and lifesaving medical care when infections hit.
In 2015, Peter’s health took a dramatic downward turn. His lung capacity fell to just 17%. He fought for every breath he took.
Please will you donate today and help us provide support and services for more families like Peter's?
After a double lung transplant in 2019, Peter's lung capacity increased by 80%, and along with it, his quality of life.
A passionate cystic fibrosis advocate, Peter now has a career, a family, and is an active supporter of Cystic Fibrosis Queensland. A far cry from the little boy who could only maintain small friendship groups because his life revolved around managing the disease and avoiding all risk of life-threatening infection. Peter is walking, talking proof that those with cystic fibrosis can live well into adulthood and reclaim the hopes and dreams that living with cystic fibrosis can take away from children.
Peter credits his quality of life today to the love and support of family, the dedicated medical teams looking after him and the support of Cystic Fibrosis Queensland, an organisation which relies on fundraising for 90% of income. With thanks to support received by donors, we work with and for the increasing number of people living with cystic fibrosis who attend a Queensland-based health clinic for treatment. Donations fund research and allow the charity to deliver support and service programs, and advocate on behalf of adults and children living with cystic fibrosis and their families.
While ongoing support services and medical intervention improve the quality of life for those currently living with cystic fibrosis, we can't do it without your donation.
And that's why today, we need your help.
With winter just around the corner, the most vulnerable in our community need your support. Peter will never reclaim the moments that cystic fibrosis has stolen from him, but he fights every day to make sure that a child born today with cystic fibrosis will have a much better life expectancy and outcome.
Please will you donate today and help those living with cystic fibrosis just like Peter live their dream of getting married and reclaim moments they thought would be stolen from their life forever?
Far from feeling resentful about his lack of childhood friendships and typical playground stories, Peter is instead filled with gratitude. Gratitude for living well past his initial life expectancy of 18. And gratitude for the generosity of Cystic Fibrosis Queensland donors whose gifts have improved his quality of life and allow him to spend precious moments with his wife and two children, now in their twenties.
While cystic fibrosis stole from his childhood, Peter firmly believes it won't steal a single moment from his present.
"I was never expected to get married, have children and travel. We don't know what the future holds, but what I do know is that with thanks to Cystic Fibrosis Queensland, I have been able to have a full life with a bright present and optimism for a bright and happy future. Without the support of Cystic Fibrosis Queensland, my life would have been a lot more difficult." Peter Stewart
Those who live with cystic fibrosis know only too well the feeling of missing out on life. While Cystic Fibrosis Queensland has made a huge difference to the lives of sufferers and their families, there are still people across Queensland and the Northern Territory who are critically unwell and dying prematurely from complications arising from the illness.
Today, cystic fibrosis sufferers still must undergo daily physiotherapy, take a large number of medications per day, may have frequent and lengthy stays in hospital, follow a high-calorie, high-salt and high-fat diet and need to exercise regularly, even when not feeling well, to keep their airways and lungs clear just to breathe. All this while continuing their normal daily activities like going to school or work. The cold and flu season heightened by the current COVID-19 pandemic present additional complications for people living with compromised immunity. This year in particular, those living with cystic fibrosis urgently need your support.
Please will you help us provide support services for those living with cystic fibrosis in Queensland and the Northern Territory?
On behalf of Peter and all those who receive support from Cystic Fibrosis Queensland, thank you for considering a donation today. With your help, we look forward to the day when all Australians live lives unaffected by cystic fibrosis.
Chief Executive Officer
PS This year, Cystic Fibrosis Queensland is celebrating its diamond jubilee, 60 years of providing support, services and hope to those fighting cystic fibrosis. The establishment of the Diamond Jubilee Donors Club will help secure the long-term future of the organisation; we look forward to including you in our diamond jubilee celebrations.