15-year-old Amelia’s lungs are not doing the job they should. Suffering from cystic fibrosis means she faces a daily battle with mucus, inflammation and sinus issues. That’s why Satan’s Little Helper sent her something “sew” good it helps take her mind off things.
When you have cystic fibrosis, breathing can feel like you’re trying to take in oxygen through a straw placed in a cup of jelly.
Amelia Rickard has lived with his degenerative condition since she was four weeks old.
“Every year she gets worse and worse,” says her mum, Margaret. “She has to take multiple medications throughout the day.”
Over the past few years, her liver function has decreased and her lung capacity has deteriorated. She’s also had two intense hospital stays in the past six months.
“She caught pleurisy (inflammation of the sheet-like layers that cover the lungs) and ended up in hospital for a month and needed her chest drained regularly.”
School of hard knocks
Margaret says Amelia struggles socially because she needs so much time off school, which makes it hard to form connections.
“She’d be in school for a week then off for two. When she started high school, she went for less than three days before she needed two weeks off.”
She’s now home-schooled and is doing better, although she must be very careful not to pick up any germs, especially since Covid hit.
Although times have been tough, her brother Sean says Amelia’s sense of humour has helped her through them.
“She ended up naming the chest drain machine ‘Steve’ and has an attitude of ‘if you can’t laugh about it, what can you do?’. She’s got a great sense of humour.”
Instead of relying on her sense of humour to get through bad times, Satan’s Little Helper wanted to give Amelia something positive to focus on. So, we got her a new sewing machine!
Sewing brings her joy
“It totally energises her,” says Sean. “She loves using it and I’ve never seen her more energetic than she was when it first arrived. She’d wake up early, so she could spend more time using it.”
“It gives her something other than all the medical stuff to focus on and gives her something to look forward to. She’d like to start making clothes for our dog – it’s a little foxy Jack Russell.”
However, a sewing machine isn’t the only bit of good news Amelia has recently received. Pharmac has announced a proposal to fund a cystic fibrosis drug called Trikafta for people aged six and above. It’s estimated that it can give those with the condition an extra 27 years of full health.
“We all cried when we heard the news,” says Sean.