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As Australia struggled with the strict lockdown restrictions earlier in 2020, five-year-old Isla was admitted to the specialist cystic fibrosis unit with a mass of infected mucus on her lungs.
Whilst 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 many families like the Russells. Make a difference by clicking here
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 affected.
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.
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 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.
Donate“How is it fair to have to watch one of your children thrive while the other battles with recurring illness and hospital stays?”
While we all hope that COVID-19 is a short-term situation and daily inconveniences are temporary, for families living with cystic fibrosis in South 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.
“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."
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.
On behalf of people living with cystic fibrosis, we thank you whole-heartedly for your generous and very practical support this Christmas.
Send a different kind of gift this Christmas, donate and help families like the Russells live their lives unaffected by cystic fibrosis.