Conquer Cystic Fibrosis Gala Ball to raise vital funds for life-threatening genetic condition in May

Like all parents, Marlene and Caillin Blackwood want their little boy Charlie to “grow old, fall in love, have a career and enjoy his life along the way.”

Marlene describes Charlie, 5, as a funny, charismatic and adorable child who deserves every opportunity to thrive. But life has not been easy for Charlie, who was diagnosed with Cystic Fibrosis just days after he was born.

Since then he has spent more than 230 days in hospital, taken more than 27,000 doses of medicine and spent 1643 hours doing chest physiotherapy and nebulised treatments.

His family lives in Bunbury, requiring hundreds of trips to Perth for treatments. But his parents and big sister Matilda have ensured life remains as normal as possible for their busy, cheeky boy who loves basketball and spending time at the skate park.

“He is a big personality, and very charismatic. Keeping him as active as possible is great for his lungs,” Mrs Blackwood said.

Cystic Fibrosis is the most common life-threatening recessive genetic condition affecting Australian children and impacts the organs, primarily the lungs and those responsible for digestion. As recently as five decades ago, it was rare for a child with CF to live to school age.

While life expectancy has since increased into adulthood thanks to medical advances, this is far from good enough for the thousands of families living with the condition.

In order to give their children the best chance at living long and happy lives, a charity formed by parents, friends and family has raised $6 million for research over the past two decades.

Mrs Blackwood is one of the dedicated volunteers at Conquer Cystic Fibrosis, who are preparing for the upcoming Conquer Cystic Fibrosis Gala Ball at Optus Stadium on May 16.

And Charlie and Matilda will be the stars of the show, officially opening the event.

Mrs Blackwood said it would be a proud moment for the family, and recognition of the impact of CF on siblings.

“There have been amazing advancements but they aren’t a cure, so the need for further research in this area is massive,” she said.

“Research is the key to unlocking a beautiful future for Charlie and reducing his suffering along the way.”

For tickets visit https://www.trybooking.com/events/landing/1419168