When you meet five-year-old Amalie, her superpowers are working on you before you even realise it. This sweet, cheeky, happy little girl has the irresistible ability to make anyone smile!
But she’s been battling bad guys for most of her life. Amalie has lissencephaly, meaning “smooth brain” – a rare malformation that results in a lack of folds and grooves in the brain. While it affects each child differently, for Amalie it means significant developmental delays, vision impairment, difficulties feeding and uncontrollable epilepsy.
Amalie’s little body is wracked with multiple, intense epileptic seizures almost every day.
Her parents Frank and Renae are constantly on high alert to detect seizures as they begin, in order to do whatever they can to lessen the intensity and protect her from injury.
They’ve tried countless medications and prevention methods but nothing has been successful in managing the seizures.
The episodes are scary and exhausting, and an incredible burden on a little body that already has to work so hard trying to do the things other five-year-olds do with ease. Seizures leave Amalie tired and listless; so different from her usual cheery, expressive self.
The illustration I’ve drawn for Amalie shows her in her swing surrounded by balloons and the bold colours she loves. The swing is her happy place, where she goes to feel better when she’s having a bad day.
“Whatever will be, will be…”
The quote came from Renae on the day I met with her to learn more about their journey. It’s clear Amalie has inherited more than just her beautiful, curly hair from her mum! Renae is so open, positive and down-to-earth, and I am truly inspired by her ability to “catch every curve ball that’s hurled at her, and ditch it back.”
Her daughter will most likely never be able to walk, speak or feed herself, and be completely dependent on others her entire life. But Renae is philosophical, reminding us that:
“Every child is on their individual journey. They are all unique.”
Amalie is an only child, and caring for her is all Frank and Renae know. Like most parents, all they want is to do the very best for their daughter.
Time spent with a range of medical professionals, therapists, early intervention teams and at school provides her with as much opportunity as possible to reach her potential; but unfortunately, seizures often prevent her from attending. They also can have the affect of reversing the progress she’s made with her development.
She needs 24-hour care, multiple medications and a large amount of specialized equipment including a custom wheelchair, standing frame, wheelchair accessible vehicle and home modifications.
To ease the financial burden, the family is constantly fundraising but again, Renae tackles it with enthusiasm and fun. Amalie is always involved wherever possible, drawing raffle winners and creating beautiful artwork for auction.
Renae is keen to highlight the value of their support networks. Online communities through Facebook and Yahoo have allowed them to connect with supporters and other affected families both locally and around the world. This has helped with raising awareness, education and providing a sense of connection with others in similar situations.
But Renae’s advice to anyone going through something like this is that it’s also important to find support networks outside of the condition, noting the importance of her friends from high school, uni and mothers group.
She says something very similar to Jane, (little hero Thomas’ mum):
“Don’t sweat the small stuff!”
Lissencephaly is a life limiting disease, and no one can say how long Amalie will live. When she was diagnosed at six months old, the literature indicated a life expectancy of around two years of age. She’s recently celebrated her fifth birthday.
Renae and Frank, (plus an extended group of family, friends and supporters!) are just so supremely grateful to have Amalie in their lives. They are making the most of every minute.
I dare you to try and watch just one video of a happy Amalie without cracking a smile! But you might also find your heart breaking a little when you get an insight into the impact of her seizures.
You can purchase prints of Amelie’s artwork here.