Charli, who turns 3 in April, has a rare lung disease called Childhood Interstitial Lung Disease. It started after she caught a cold at 4.5 months old, causing inflammation of her lung tissue so that her lungs no longer absorb oxygen properly. She struggles to breathe every day, and requires continuous supplemental oxygen. Her condition is so rare it has no diagnosis or real prognosis.
Charli is on an immunosuppressant to prevent her immune system from attacking her lungs – but this makes her very susceptible to caching bugs. She also takes antibiotics every week, because a simple cold could easily trigger an infection and scar her lungs.
Because it takes so much work for Charli to breathe, her metabolic rate is very high and she struggles to grow. She was fed via a nasogastric tube for 14 months, and may still require a PEG soon, which is a more permanent solution to allow feeds to be introduced directly into her stomach. At almost 3 years old, she has finally hit the 10kg mark!
Charli’s future is unclear, as the cause of her disease is currently not known. There are no clear treatments, no protocols, and limited research to guide her medical team’s decisions.
Charli is a brave soul, who despite everything is almost always happy and has a great sense of humour. Her family feel very blessed to have this beautiful little munchkin in their lives!Share