Help Skylah reach her target

SKYLAH Taylor is not your average Wonthaggi nine-year-old.

Her video, edited by her aunty and Tiff, and made for classmates to understand cystic fibrosis (CF) has gone viral within the community, and her openness to share her journey and experience is heart-warming.

“There is not a lot of patient related information, there is a lot of doctor-based information” mum, Bec Dell, explained.

“The fact that Skylah has managed to make a video explaining in such simple terms what her daily life involves, I think would be great to get out to families of kids with CF, so they have a simple understanding, and to share her experience with a lot more of the world.”

In her efforts to raise awareness for CF, Skylah jumped onboard the Great Strides Challenge 2022, undertaking four cartwheels a day.

“I love doing cartwheels and it’s been my thing since I quit gymnastics,” Skylah explained.

Unable to participate in the run in Melbourne, Skylah’s nan first suggested the idea to Skylah to participate in the virtual challenge.

“My nan and pop they decided to do a five kilometre walk or run every single day of September. I thought, why don’t I do four cartwheels a day.”

Supported by her loving family, everyone got on board.

“Each one of us picked a specific thing that we were going to do; my challenge was to walk five kilometres a week,” Bec added.

“Mum (Nan) also completed the half marathon in Melbourne on Sunday.”

Great Strides is an annual fun run/walk, and now virtual event, to raise awareness for people living with cystic fibrosis.

The funds raised ensure that people living with CF get the support they need to live a happier and healthier life.

Living with CF is not an easy journey for Skylah, but one she takes it in her stride.

“It’s very hard to deal with,” Skylah said.

“When I was born my mum thought she was doing something wrong because I was losing all this weight.

“Five weeks in they got the information that I had CF and they started treating me with physio and tablets. When I was officially able to swallow tablets, I got my creons.”

Swallowing tablets when she was around two and a half, Skylah now takes on average 26 to 30 tablets a day.

“When I was six, I had a lobectomy; I’ve also had a collapsed lung.

“It was hard because I had my (sixth) birthday in the hospital, and I couldn’t see my friends.

“I got this really nice chance to see my (prep) school friends because they teamed up the laptop so I could call my class.”

Skylah is no stranger to hospital visits either with a stay scheduled this week.

“All of a sudden, she came down with a cough and generally when she goes to hospital it’s for two weeks at a time,” Bec said.

“She’s got an amazing support system – myself, her dad, her stepdad, and her older sister.

“My mum and dad, are the absolute angels on earth they do so much to help her.”

“The hospital is also a really great supporter,” Skylah added.

“They have the school, so I don’t miss out and my physio team take me out and do physical activity with me and I just have the best time.”

With the Starlight Room also on hand there is no end to entertainment and activities, the only catch is staying away from those with the green band (fellow CF kids).

“CF affects my lungs and sometimes our brain and it has blocked up my pancreas; it pretty much effects most of my body,” Skylah explained.

“I have to have special medications (creons) to crush down the fat in my foods.”

Skylah’s body does not break down fat, yet her diet has to be high in fat so she can retain weight. She is even fed through a peg at night to help maintain her weight.

Skylah has also long been a poster child for wearing masks in public.

“If we go anywhere Skylah generally wears a mask. Anybody out in the community, who may be unwell, even the slightest cold, will end up with her being in hospital for two weeks,” Bec said.

“COVID was a massive scare for us because it pretty much would have been fatal.

“Even the slightest little cough, cold, niggle, if she’s in a classroom with a child who potentially has a cold, she’s going to end up with it and end up in hospital.”

For Skylah, the worst part of CF is not being able to just go out and play.

“I have to do my physio and my night feed restricts me from sleeping on my belly.

“I also have to be careful of my peg and port.”

At the end of the day Skylah is just like any other nine-year-old.

“She’s a very normal, active kid. She has to be up first thing – we have an hour to do meds, treatments before she even has breakfast.

“The amount of resilience she shows towards everything she does, there is no stopping her, CF may be part of her life, but it doesn’t hold her back.

“She will try her hardest to do everything that everybody else does, she doesn’t hesitate, she doesn’t think twice about it; she’s pretty strong.”

Skylah has raised $940 to date – let’s help Skylah break $1000.

Visit greatstrides.org.au/my-fundraising/606/skylah-taylor to donate today.