communitynews | 20 Dec 2023 |

When you think about Superheroes, the words ‘courage’, ‘integrity’, and ‘heroism’ are among the first to come to mind. These characters often embody positive values, and people look up to them as role models. 

For sick kids in hospital, anything that helps to brighten their day and makes them feel invincible has The Bankstown Sports Group’s tick of approval! 

Which is why earlier this year, we supported the Fair Fight Foundation with $20,000 for their Supertee program which provides families and children at local hospitals with a special medical garment to make their treatment a little easier to get through. 

The Supertee is an updated version of the traditional hospital gown, especially designed for children. Its unique and innovative design allows doctors, nurses and parents to bypass medical links for easier access to change dressings and provide care, without causing too much discomfort for the patient. 

The garments are designed in superhero themes to celebrate the true heroism of sick kids and encourage imaginative play. 

Close to 500,000 children need the services of Australia’s hospitals every year and a significant number of those are diagnosed with a critical illness that requires long-term care.  

One of those kids was Indy, whose mum has shared her story. 

In February 2013 just days after her first birthday, the celebrations quickly turned to distress as our little girl was diagnosed with catastrophic epilepsy at just 1 year old. As a family we knew nothing of what this disease could bring and thought she would just take some medicine and all would be ok.... how wrong were we.  

That whole year was an absolute blur, more admissions than I had fingers and toes to count, didn't have a minute to catch my breath and think about what was happening, having to learn a new lingo that quickly became my normal vocabulary and an astounding 14 different medications trialled and failed to help our daughter Indy.  

Fast forward to December 2013 her first lifesaving brain surgery at just 22months old, we were isolated, lonely had no one to talk to who had walked or been in a similar path prior to us - discussions amongst parents was not overly encouraged due to everyone's trauma of their journeys and to say we were isolated with nobody that understood is an accurate reflection.  

The brain surgery saved our daughters' life - I don't say this lightly, as if they didn't operate - she would not have lived to the age of 4 and that's being generous with the rate she was constantly seizing, and brains damage being caused every other minute of every single day.  

Indy & our family were given our lives back in a sense after that surgery and recovery, she had to adapt to peripheral vision loss due to the surgery but otherwise she was good and learning, growing, and thriving. 

At the end of 2017, the seizures started changing and picking up momentum again, however in June 2019, she took a catastrophic turn, one that the team could see was coming with the monitoring they were doing on her and had desperately trying to stay ahead of the game so to speak. Sadly, this was not the case and Indy started the biggest battle she had faced to date, she was fighting for her life and fighting hard. No meds worked, as the seizure became, longer, more damaging, .and dangerous to her day to day living - we were facing the next non-decision - decision which was another brain surgery with bigger risks than ever before. 

During this time, is where our journey started with Supertee, a friend on Facebook messaged me and said "hey I have someone who wants to send you something for Indy" first of all how amazing that someone cared about us and our child that was a stranger and second of all when she received it I thought how amazing is this! It had access, covering of my daughter in some of her most vulnerable times and it became a real placebo effect of her superhero costume! 

Covid delayed the brain surgery due to the restrictions of needing a scan that was not category 1 - yet our daughter and our quality of life was quickly deteriorating. It got to the point that they had to rush our daughter into life-saving surgery within 48 hours of a phone call - as the team were worried, she couldn't hold on much longer.  

On Sep 8, 2020, Indy underwent her second lifesaving brain surgery and we started again. this time though she proudly wore her Supertee right up until being put to sleep on the table - I wore my sidekick shirt proudly as this outline exactly what our girl, and her siblings and us are superhero sidekicks!  

Right now, as this email comes to you, Indy has her quality of life back and we can breathe and enjoy the moments that are presented to us. Epilepsy has stolen so much from our family over the last 10.5 years, it's nice to have a smile on our face instead of distress.  

What this journey has also brought me to do is fight for other families like ours and help get their kids a Supertee. You know why, because in the most catastrophic moment our family had to date, it was thew hug I never knew I needed and it changed the mood of our journey.  


To read more stories like Indy’s or to find out more about Supertee, visit https://www.supertee.org.au

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