Article from 2019/2020 Auxiliaries Annual Report

Difficulty breathing, wheeziness, persistent coughs and lung infections – cystic fibrosis (CF) is a lifelong disease with no known  cure, and in Australia one baby is born every four days with the condition. The RCH cares for over 250 children with CF each year, 32 per cent of whom live regionally. The management of the condition is lifelong, with frequent hospital visits for medical treatments and physiotherapy.

For regional patients, these frequent hospital visits add further complications to their treatment, not only for the long travel time and disruption to school, work and family life, but also the increased risk of cross-infection at the hospital. The COVID-19 pandemic has caused even further issues for CF patients and families as they are at heightened risk from the infectious respiratory virus.

Thanks to the generous efforts of Caring Friends of CF Auxiliary, Wangaratta Auxiliary, the President’s Fundraising Network and primary students from Mount Scopus Memorial College, 65 regional families now have their own device for testing lung function to use in telehealth video-call appointments, meaning they don’t have to travel to the RCH to receive their care.

Known as spirometers, these devices feature a mouthpiece for patients to breathe into, which assesses how well their lungs are working and allows RCH clinicians to complete tests remotely. This new way of monitoring CF patients was put in place before the COVID-19 restrictions and has since allowed for a smooth transition to care from home.

“Children with CF previously required a clinic visit every three months, but if they become unwell then this can be more frequent. For some, a visit to the RCH could be a five hour round trip. Including a telehealth spirometry assessment at home can replace the quarterly visits and means we can monitor children more closely leading to better patient care,” said Nicole Westrupp, Senior Respiratory Scientist at the RCH.

“We are so grateful for these devices as with COVID-19 we shut the Respiratory Lab for all face to face testing in March. These devices arrived about two weeks into this closure and we sent them out to all high risk children. Without these devices they would not have been monitored for months.”

For CF patient Liam Bowness and his mum Kirsty, telehealth spirometry is a game changer.

“I can’t speak highly enough of it, doing telehealth spirometry is  straightforward, the equipment is easy to use and saves us so much  time. We live in Torquay and being able to do it from home means  I don’t have to change work and Liam doesn’t have to miss school and go all the way in to the hospital for the 10 minute test. Thank you!” said Kirsty.

The funding of the telehealth spirometers is just one example of the impact of cross-generational fundraising and collaboration and the difference that can be made through the RCH Auxiliaries to children’s health.

Meet the supporters

Caring Friends of CF Auxiliary was established in 2006 to support CF patients and their families. The dedicated members have raised funds through a range of events including dinners, raffles and silent auctions, and through stalls at the hospital. Caring Friends of CF generously contributed $90,000 to purchase 50 spirometers.

Wangaratta Auxiliary have been long time supporters of the hospital since 1977, engaging the community with raffles, sausage sizzles, bus trips and street stalls. Their main event is held annually at the Oxley Market on Melbourne Cup weekend where they sell their homemade range of sauces, relishes and jams.

“Being from a regional location we also thought this donation of $19,000 for 10 spirometers was useful as they can be used in the home where the patient lives,” said Georgina Rea, secretary of Wangaratta Auxiliary.

Mount Scopus Memorial College primary students, in partnership with the President’s Fundraising Network, were encouraged to fundraise for regional CF patients. Feeling inspired to help, year groups worked to raise money in different and creative ways.
The primary students organised a range of fundraising activities including baking and selling honey cakes for Jewish New Year, collecting gold coin donations at sports day, racing around the velodrome for donations and holding a bake sale stall in Caulfield Park. Even the youngest students in kindergarten got involved, raising over $1000 by each donating their birthday money to the cause. From their collaborative efforts, Mount Scopus students raised an incredible $6,300.

“It was a wonderful example of what’s possible amongst our youngest generation of philanthropists. I hope I’ll be able to create impact with other schools next year,” said Shelley Kline, AEC member.