Leonie and Mackealie's Story
Just ten children in all of Queensland suffer from the rare genetic disorder known as ‘pulmonary ciliary dyskinesia’. Mackealie is one of them. The disorder means hairs in the lungs that usually clear out the mucus do not work.
“When she was born, she was big and healthy, but she couldn’t breathe properly,” says mum Leonie. “She wasn’t holding oxygen, so she went into intensive care and we fumbled along for a long time. Antibiotics would clear the infections, but that was just a Band-Aid for what we didn’t realise was going on underneath.” Now she’s 14, Mackealie spends at least a quarter of every year in Townsville Hospital.
“As a parent, when you first get the diagnosis it’s like you’re going through a tunnel and you’re trying to get out the other side,” Leonie says. “You are digging and digging and breaking rock, trying anything and everything to get through. Every bit of your energy goes into that.”
“Because of the Ronald McDonald Family Room, for a tiny minute you get to stop and rest. You walk in and it’s like a home and you can breathe. You can let yourself physically and mentally relax, and your child can do the same. You can regroup and get ready for the next battle.”