Charlotte began treatment for cystic fibrosis - a life shortening genetic condition primarily affecting the lungs and digestive system - from 2 weeks of age after spending time in NICU with a bowel blockage at birth. In her 11 years, she has had countless hospital appointments, tests, admissions and procedures. She has spent too many hours to count on daily physiotherapy and taken thousands of doses of numerous medications. There isn’t a day where she gets to take a break from her physiotherapy and medications. Her current life expectancy is 37 years. Her peers is 84 years. It's horrible, exhausting, unfair and scary. So, we fight - we raise awareness and funds to improve hers and the lives of others with cystic fibrosis. The CF community are devastated at the moment that our government deferred their decision to add Trikafta - an amazing drug that can significantly improve and extend the lives of 90% of people with CF - to the PBS. It's the closest thing we've ever had to a cure and we cannot afford it ($410,000 per year). So CF associations need your support now more than ever to fight for access.
In previous years, Charlotte has challenged herself to meet 65 dogs, slide down 65 different slides, complete a lap of 65 different ovals and make 65 different scrunchies. This year, she is challenging herself to trying to Ollie 650 times! We've also made it a team challenge this year with some of her fellow shredders challenging themselves to practice and master tricks too. Some are working on Ollies, others on kickflips!
All funds raised will go to Cystic Fibrosis Tasmania (CFT) who provide valuable services to Tasmanians living with CF and their families. It's important to know that CFT DO NOT receive any Government funding. This means they rely on their own fundraising efforts from events, grants and sponsors.
Some of the important services and programs they provide are:
It's amazing how far CFT can make a dollar stretch. Please help me in my quest to raise funds for them in 2021 as they strive to offer new services to cater for the individual needs of Tasmanians living with CF.