CF Warrior – Aveline
Cure4 Cystic Fibrosis researchers are currently exploring treatments that will significantly extend the life expectancy of people with cystic fibrosis by targeting infections known to reduce the length and quality of life.
Baby Aveline is not yet a year old and has already endured more than most. Diagnosed with cystic fibrosis at just 5 weeks old she has spent much of her life in and out of hospital and needs a team of specialists to help look after all her medical needs, including a respiratory physician, dietician, physiotherapist and psychologist.
After the devastation of her diagnosis Aveline’s mum and dad, Jenny and Leigh work around the clock to ensure she can stay as healthy as possible until a cure is found. Their daily routine is relentless and includes preparing vast amounts of medicine, pro-biotics and vitamins suitable for a baby to ingest, physiotherapy to help clear the mucous and ensuring strict infection controls are in place.
Battling cystic fibrosis is a full time-job. That’s the reality of this insidious disease.
Cystic fibrosis is a multi-organ, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It causes a buildup of thick, sticky mucus in the lungs which makes people with cystic fibrosis more likely to develop bacterial infections that can last for short periods of time or for many years.
Bacterial infections in people with cystic fibrosis like Aveline can lead to a decline in lung function and cause lung disease, which is the primary cause of death in people with cystic fibrosis.
Through our recent grant round, we have uncovered incredible Australian research that has the potential to transform cystic fibrosis treatment globally. Professor Marc Pellegrini’s Burkolderia Cepacia and A/Professor Sarah Vreugde’s Non-Tuberculous research projects will explore treatments that will significantly extend the life expectancy of people with cystic fibrosis by targeting infections known to reduce the length and quality of life with cystic fibrosis.
Aveline had her first bronchoscopy under a general anesthetic recently and thankfully it came back clear of any deadly bacteria. Jenny spoke of her relief and described the result as a wonderful gift. She knows however, this may not always be the case.
Like Aveline, people with cystic fibrosis have a higher risk of developing infections, even if they are taking drugs like Orkambi or Trikafta. And for those who have a long-term, ongoing infection, Orkambi and Trikafta won’t make it disappear.
Until CF is completely cured, treatments that deal with aggressive infections will always be needed.
The new therapy that Professor Marc Pellegrini is developing would work hand-in-hand with these new drugs to fight infections and improve overall health.
It is especially exciting to note that this therapy is not an antibiotic and works in a way that prevents bacteria from developing resistance to it.
On the 28th January 2020, Cure4 Cystic Fibrosis will open a new cystic fibrosis grant for scientists concentrating on cure focused translational research. That’s the type of research that has the best chance of making it into the hands of patients.
Quite simply, the more funds we can raise to invest in research, the faster to a cure.
Your gift will fund vital research and help pave a future free from cystic fibrosis.
Show you’re ALL FOR THE FIGHT by donating to our research fund and help give baby Aveline the best chance at a future free from cystic fibrosis.