Perth Voice Interactive

SEVEN-YEAR-OLD Amelia Kim is starting to realise her ‘normal’ is different from everyone else’s.

The Hammond Park youngster has cystic fibrosis and on a bad day has to take up to 40 pills and have two bouts of physio.

“When Amelia was younger cystic fibrosis made her feel special, however as she gets older, she is beginning to feel like it can be a burden,” says Amelia’s mum, Amanda.

“…the handfuls of pills she takes each day, the daily physiotherapy, the nebulised treatments, the frequent hospital appointments, the school absences or missed events due to illness.

“Her daily physiotherapy is often the biggest challenge as, understandably, she wants to be off playing like the other kids instead of sitting down doing her treatments.”

Thankfully, Amelia is a plucky, up-beat soul and is naturally “optimistic and happy”.

She lives life to the full and enjoys gymnastics, swimming, dancing and singing.

“We try to change up her physio routine when we can, reward her often, and make life as fun as possible in between all the medical stuff to keep her spirits high,” Amanda says.

Children with cystic fibrosis cannot be in close contact with each other due to the high risk of cross infection, adding to their feeling of isolation and loneliness.

Thankfully, Cystic Fibrosis WA recently setup CF Kids Connect, a safe online program for children with the condition to socialise and do group activities like lego, clay, craft, origami, potion making and even designing a fundraising tote bag for the CFWA Shop.

Therapist

The sessions are for kids aged 5+ and facilitated by CFWA’s child and family therapist.

“It always made us sad to think Amelia wouldn’t ever be able to hang out with those who understand what she goes through best, so the CF Kids Connect program has been an invaluable initiative,” Amanda says.

“The sessions are very relaxed, and the kids are welcome to chat and connect about anything they like – sharing the highs and lows of living with cystic fibrosis amongst all the other ‘kid stuff’. 

“It was very cute hearing them all discussing how many enzymes they should take after their last baking session when it was taste testing time.”

Having a child with chronic illness can put strain on the entire family, and often younger siblings don’t understand what’s happening and feel they are not getting enough attention.

Amelia has a five-year-old sister Scarlett, and Amanda says the sibling events organised by CFWA are invaluable.

“The CF Sibs Camp and CF Sibs Day Out are also great ways CFWA support the siblings of children with cystic fibrosis,” she says.

“Growing up with a sibling who has a chronic illness isn’t easy, and this allows them to also have some respite from the challenges.”

It’s been nearly four years since Amelia’s last hospital admission and she is in “relatively good health”.

She recently participated in a clinical trail of Trikafta, a new drug to treat cystic fibrosis, which she is still taking.

More than 400 sandgropers have cystic fibrosis and it’s the most common, life-limiting genetic condition affecting Aussies.

It causes an abnormal amount of sticky mucus within the lungs, airways and the digestive system, which can lead to irreversible  damage. Amanda says the treatment model has shifted over the years.

“Cystic fibrosis treatments used to be about trying to treat the symptoms and reverse the damage already done, however now it’s about preventative treatments and slowing down the progression of it,” she says.

“New medications that treat the underlying cause of cystic fibrosis, such as Trikafta, mean our children will now not only live long lives, but also have an increased quality of life.

“We are still very optimistic that a cure for cystic fibrosis will be found in Amelia’s lifetime.”

On May 24 CFWA are holding their annual fundraiser, 65 Roses Day, with people ordering red roses to raise money for the not-for-profit.

There’s also a Virtual Rose Garden if you don’t want to buy a physical bouquet and other options to donate.

This year Amanda is selling roses on CFWA’s stall at Bunnings Cockburn Central. To donate or find out more see fundraise.cfwa.org.au/65-roses-day.