May is Cystic Fibrosis Awareness Month, the most common genetic disorder in Australia that reduces a child’s life expectancy to 37. In Australia a child is born with CF every 4 days. Kate’s beautiful daughter Roxie has cystic fibrosis and wants to spread awareness and educate people about this genetic disorder.
CF is autosomal recessive meaning that it occurs equally in males and females. The CF gene must be inherited from both parents and it can skip generations. 1 in 25 Australians are carriers and do not know this until one of their generations has a baby with CF.
Cystic Fibrosis is caused by a faulty gene causing an difference in the salt chloride in the body’s cells which causes the normal mucus we all have in our organs to become sticky. This mucus traps bacteria in the lungs and causes irreversible damage so people with CF slowly lose their ability to breathe and need a transplant as a young adult.
CF impairs the digestive function of the pancreas so a person cannot digest their food and can be at risk of diabetes.
CF also affects reproductive organs so people who do live to an age where they are ready to have children can have a lot of difficulty conceiving.
Because of her CF, Roxie has an extensive range of treatments including;
- Twice daily physio
- Inhaled nebulisers and antibiotics
- Medications with every item that has a gram of fat in it
- Salt tablets to replace the salt lost from the sweat glands – she loses a lot more salt than people without CF
- Oral antibiotics twice a day for her lifetime
- Vitamins
- Probiotics
Unfortunately Roxie has regular hospital admissions to treat lung infections with intravenous antibiotics, to try to keep the lungs alive for longer.
There is currently no cure for CF but gene therapy may result in one as well as some newer drugs that are being developed around the world (that are not being funded in Australia at present).
Kate is running for Roxie in the HBF Run for a reason, she has already raised a staggering $3,000 for Cystic Fibrosis WA to help fund research to find a cure for this cruel genetic disorder. Kate’s words are beautiful – “I’m running for you Roxie. I hope you will outrun my lifetime that’s for sure.”