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Local mother Cassie Jones and the combined Rotary Clubs of Mudgee have organised a special fundraising screening of the Hollywood film Five Feet Apart this Friday (May 24, 2019).
Starring Cole Sprouse (of Riverdale fame) and Haley Lu Richardson, Five Feet Apart tells the story of Will and Stella, two teenagers with Cystic Fibrosis who fall in love but medical restrictions dictate they must maintain a safe distance away from each other.
Proceeds will support Cystic Fibrosis Community Care NSW, a not-for-profit group that provides financial assistance, advocacy, education and medical equipment to NSW individuals and families living with CF.
In Australia there are only 3,500 people living with CF, and despite being a small rural town, there are several families in the Mudgee region affected. One of them being Cassie's four-year-old son Charlie Rixon.
"In the CF community, the movie is quite significant." she said. "It's the first time Cystic Fibrosis has been given such a huge worldwide platform and it's created a lot of awareness about a disease that many people have never heard of."
CF is a genetic condition that causes an abnormal amount of excessively thick and sticky mucus within the lungs, airways and digestive system. Leading to impairment of the digestive function of the pancreas and traps bacteria in the lungs resulting in recurrent infections and irreversible damage.
Lung failure is the major cause of death for someone with CF. There is currently no cure, with medicine and treatment required daily in order to live a normal life.
"In the month of May alone, Charlie will swallow no less than 320 digestive enzymes, 258 pills of other medications, 63mls of antibiotics, do 31 nebuliser treatments for approximately 8 hours, sit through 16 hours of physiotherapy, and undertake at least 31 hours of exercise to specifically encourage mucus movement out of his lungs," Cassie said. "That's just Charlie's 'healthy' routine, if he picks up a virus, bacteria or develops complications, then we add more medication and treatments, and possibly even a hospital stay in Sydney on IVs. Charlie has severe genetic mutations so we work really hard to keep him as healthy as possible to prolong his life into adulthood."
- Tickets are $25 and include a glass of Vinifera wine, canapes and entry in the lucky door prize. Available from Byrnes Jewellers.
