Three years ago we welcomed a fat, healthy baby granddaughter into the world. Charli was tenacious - even then. Perhaps she knew what lay ahead. At 4.5 months, she became unwell with 'just a cold'. As time went on it was clear, it was not a cold; and eventually Drs resolved to give her a diagnosis of Unknown Childhood Interstitial and Diffuse Lung Disease (chILD). This rare disease makes it hard for Charli's lungs to absorb oxygen. She is on oxygen therapy most of the day and night, and has low reserves when viral illness hits. It has impacted her growth significantly, and meant that basic activities are more complex and physically demanding. However, she still shines brightly through it all. She is wise beyond her years, and commands the room, and seems unfazed by others perception of disability. She could sing before she could talk, and she danced before she could walk! She is charli and she is mighty. She is rare, that is for sure, and not just because of her disease.
To date there has been next to no support or awareness of chILD and paediatric lung diseases in Australia. I am set to change that!
To raise awareness and fundraise for the Lung Foundation - their New Young Lung Program I will ride my mountain bike 1000km from Mundaring WA to Albany commencing the 16th Sept 2017. Some of Charli's medical team are planning to join me for part of the ride, along with good friends and family. Please support us!