Lily has cystic fibrosis (CF), which means her lungs don’t work as they should. To help keep her airways clearer, in the most fun way possible, Satan’s Little Helper partnered with Jumpflex!
Lily’s life has been a rollercoaster. Diagnosed with CF at six weeks old, she has been in and out of doctor appointments ever since and has to receive daily physical therapy on her chest.
CF is a genetic disorder that mainly affects the lungs and digestive system. The body produces a thick, sticky mucus that can lead to repeated chest infections due to bacteria and fungus becoming trapped within it.
In the digestive system, thick secretions can also block the flow of digestive enzymes from the pancreas to the top part of the intestine.
Serious condition
“Since her diagnosis, she’s had frequent hospital appointments, yearly blood tests and x-rays,” explains her mum Niketia. “In January this year, she was hospitalised and ended up in the intensive care unit due to a sodium imbalance caused by dehydration.”
That’s a lot for a two-year-old to deal with and spending a week in hospital wasn’t the best for her mental health!
“She’s seeing a psychologist now, as she has a lot of trauma surrounding her medical treatment.
“She absolutely hates blood tests and doesn’t like going to the hospital much either, which is difficult because she has an appointment every three months!”
Lily was given a weighted teddy bear by her CF social worker, which helps calm her anxiety during appointment time.
“Lily is also under the care of a paediatrician and dietitian, and needs to take pancreatic enzymes every time she eats something that has fat in it.”
Staying active to stay healthy
One way that Lily can make sure she doesn’t need to do as much intense physical therapy is to stay active, which is also great for helping improve lung function. But when you’re two years old, exercise can be a bit boring – so, Satan’s Little Helper partnered with Jumpflex to send Lily a state-of-the-art trampoline for free!
“Lily absolutely loves it,” says Niketia. “She wants to go on it all the time – even when it’s raining! It burns off a lot of her energy and, when she uses it, she’s helping her body to disperse the mucus in her lungs, which means she doesn’t have to rely on physio work to break it up.
“She loves to play a couple of games in particular – one called ‘crack the egg’ (where one person curls up in a ball and the other bounces around them to force them to uncurl) and ‘Ring a Rosie’. It’s been such a great help.”
When she turns six, Lily should be eligible for Trikafta. Cystic Fibrosis NZ calls it a paradigm-shifting, breakthrough treatment, which could turn cystic fibrosis from a life-threatening condition to a manageable one.
“Lily is very smart for her age and she loves learning,” says Niketia. “So we are hopeful that she will have a bright future regardless.”
With a great new way to have fun, burn energy and clear her lungs, combined with the potential to go on a drug like Trikafta when she’s older, it looks like Niketia’s wish may come true!
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