Summer is a young woman who just wants a little more freedom from the restrictions that cystic fibrosis places on her life – and Satan’s Little Helper reckoned that wasn’t too much to ask!
Cystic fibrosis is a condition that plenty of us have heard about – but how many truly understand it?
A diagnosis is life changing. There is no cure. And, according to Cystic Fibrosis New Zealand, it’s the most common life-threatening genetic condition affecting Kiwi kids.
People without the condition make mucus that is thin, slippery and works as a lubricant to protect the body from infection. Those with cystic fibrosis produce thick, sticky mucus that is difficult to cough up and can cause fungus and bacteria to become trapped in the body. This causes inflammation and infection.
“To make matters worse, Summer is not eligible for the ‘wonder drug’ Trikafa, as she’s one of four people in the world with a specific mix of genetic mutations,” explains her mum, Emily.
Since her diagnosis in early 2021, Summer has endured multiple hospital admissions for bacterial infections in her lungs; the longest lasting 16 days. Over the past 12 months, she has spent around seven weeks in hospital and been forced to stay home when she’s sick.
At the same time as her cystic fibrosis diagnosis, she was rocked with more bad news.
“Doctors also discovered that she has a heart problem called atrial tachycardia, which means she has an abnormally fast heart rate. She’s taking beta blockers for that and also has had a heart-rate monitor inserted into her chest.”
Summer has stuck to her strict regime of a twice-daily nebulised lung treatment and chest physio, which is difficult when you’re a teenager with a life to live.
To help her manage her treatments discreetly, and to give her more opportunity to leave the house and have fun, Satan’s Little Helper sent Summer a travel nebuliser (a machine that turns medicine into an easily-inhaled mist).
Helping Summer live her life
“It’s been such a help,” explains Emily. “For example, she was training for her Duke of Edinburgh award and went tramping. She was able to take her nebuliser with her and continue her treatment while she was away. She couldn’t have done that before.”
Regular exercise is an important part of the management of cystic fibrosis and it also is great for Summer’s mental health – so the nebuliser gives double value!
Emily says it also helps reduce her stress regarding the management of cystic fibrosis and has allowed Summer to feel more comfortable using it in public, as it’s a small device that can “blend in” with her environment.
“Because of the nebuliser, Summer can socialise more and be more of a ‘normal’ teenager, which is all we’ve ever wanted.”