While you and I wait for COVID-19 to pass so normal life can resume, a family with cystic fibrosis (CF) never stops waiting.
They wait for more effective treatment and drugs. For life expectancy to increase. For a cure for this insidious disease.
Your generosity towards people living with CF means that, together, we can improve outcomes and end their waiting.
“Finally, because of COVID-19, the world has now caught up.”
As the whole world grapples with the physical, emotional, and social changes brought about by COVID 19, Tegan Russell feels a sense of relief.
Five-year-old twins Isla and Maeve were diagnosed with cystic fibrosis at just five weeks old. After the standard heel prick test, mum, Tegan received a call to say there were some anomalies.
Her world as she knew it stopped.
While there was some glimmer of hope from the initial call, that was quashed immediately when the family met with the specialist team at the Children’s Hospital. Both girls were diagnosed with cystic fibrosis, an illness with a life expectancy of under 47 years but where most don’t live past their twenties.
Cystic fibrosis is a genetic condition that hinders breathing and can lead to potentially fatal lung infections. The disease also lowers immunity meaning that even the common cold could prove fatal. Since diagnosis, the Russell family has built their life around avoiding colds or flus, and now – as we can all understand - COVID-19.
Infection control has always played a critical role in keeping the girls safe, and not just during the pandemic!
Often, the girls have missed out on seeing friends and extended family members due to illness for fear that they too would catch a cold or flu and become unwell. The family makes sure that they always carry face masks and hand sanitiser.
Their twins’ lives depend on it.
Did you know that in Australia, a child is born with cystic fibrosis – a condition for which there is no known cure - every four days?
Immediately after diagnosis, the baby girls entered a gruelling daily physiotherapy program to keep airways clear and avoid potentially fatal lung infections. As busy parents, administering physio and medication while working full time and raising another child five years older, meant that external family support was essential to keep the wheels turning.
Cystic Fibrosis Australia advocates for the best drugs and treatments, funds CF research that improves both the quality of life and length of life and managed a raft of clinical improvement programs that have led to better health outcomes and a greater life expectancy for all Australians with cystic fibrosis.
Will you please donate this Christmas and help families like the Russells live their lives unaffected by cystic fibrosis? DONATE HERE NOW
The isolating impact of COVID-19
As Australians struggled with strict lockdown restrictions, five-year-old Isla was admitted to the specialist cystic fibrosis unit with a mass of infected mucus on her lungs.
As the tenacious little girl struggled to clear the infection so she could return home sooner to her family, her parents experienced a very different kind of hospital admission to the four they’d previously tackled.
Where there was once an army of support visiting around the clock, this time, only two visitors were allowed in a 24-hour period.
Something as simple as a friend dropping some craft activities off at the hospital room and saying hello meant Tegan and her husband then had to request special permission to do a changeover so one parent could remain by Isla’s side.
Your donation will help reduce hospital admission frequencies and duration for families like the Russells.
Lack of family support in the hospital wasn’t the only battle faced by the Russell family during Isla’s last admission.
As they juggled the impact of Isla’s hospital admission with their other two children, social distancing regulations meant the usual support at home diminished too.
What was previously a flood of helpers rallying around cooking, cleaning, and helping with school pick-ups and drop-offs was now reduced to help from a distance, dropping meals on the doorstep and waving from the gate. The physical and emotional support significantly plummeted.
During this global pandemic where practical and emotional support has been forcibly removed for families experiencing hospital admissions, children like Isla and Maeve need your help. Please will you donate today to help the twins avoid hospital admissions that can isolate them from family and friends?
While it might feel like cystic fibrosis doesn’t discriminate, mum Tegan tells a different story.
Maeve has been taking the life-extending medication Orkambi for the past six months. She has gained weight; her energy levels have increased, and she is healthy. While advocacy funded by Cystic Fibrosis Australia donors has led to the availability of this breakthrough medication for Maeve, in a cruel twist, Isla doesn’t qualify for the life-extending treatment. The medication she needs for her current lung issues means she can't take both. While Tegan watches one of her children become healthier, she watches another continue her battle.
“How is it fair to have to watch one of your children thrive while the other battles with recurring illness and hospital stays?” said Tegan.
Because of the donor-funded advocacy provided by Cystic Fibrosis Australia, Maeve has been lucky enough to have only had one hospital admission.
Donations have funded access to vital drugs and treatments like Kalydeco, Orkambi and Symdeko and these have improved outcomes and reduce the incidence and frequency of hospital admissions.
Please can you donate today and help improve outcomes for more families like the Russells this Christmas time? DONATE HERE NOW
While we all hope that COVID-19 is a short-term situation and daily inconveniences are temporary, for Tegan and over a 1,000 families living with cystic fibrosis in Australia, social distancing and isolation is the cruel reality for the rest of their lives.
Living with cystic fibrosis isn’t a short-term disruption as most of us have experienced through COVID-19.
It’s a lifestyle.
Families living with the disease must face self-isolation and increased hygiene measures every day of their lives with no end in sight. Much like COVID-19, cystic fibrosis can be isolating and lonely.
Your donation today will help us take more steps towards lives unaffected by cystic fibrosis.
Mum Tegan says, “Thank goodness the world has caught up. Now people understand why we can’t attend group gatherings and must check numbers and physical distancing capacity. While the rest of the world waits for COVID-19 to be over, this is what we must face for the rest of our lives. Thank you for supporting Cystic Fibrosis Australia and helping us live a more normal life.”
Please will you donate to Cystic Fibrosis Australia this Christmas so that families like Tegan’s feel supported and less isolated this Christmas?
On behalf of people living with cystic fibrosis, I thank you whole-heartedly for your generous and very practical support this Christmas.
Chief Executive Officer
P.S Please, send a donation to Cystic Fibrosis Australia to help end the waiting for children like Isla and Maeve, so that they can live their lives unaffected by cystic fibrosis.
DONATE HERE NOW
Your precious gift is tax deductible and your generosity towards people living with cystic fibrosis will improve their outcomes and end their waiting.
Cystic Fibrosis Australia is committed to protecting your information privacy. We collect and use your personal information to process and record donations, provide receipts and update you about our work and events. For more information visit www.cysticfibrosis.org.au or phone (02) 9816 4510