Lizzies`s Superhero Story

Introducing Lizzie!!! A bright and cheerful 9 year old who is always ready to spread some joy!

Lizzie was diagnosed with KIF1A at 7 years of age after a long and complicated diagnostic journey. From a young age it was evident to her parents, Clare and Greg, that Lizzie was not meeting typical developmental milestones. Occupational therapy, speech therapy and physio were all commenced before 18months of age. After much testing, assessments, MRIs and specialists such as neurologists, paediatricians, geneticists and ophthalmologists, Lizzie finally had a diagnosis. It wasn’t at all what her family wanted to hear and the journey of fear, grief and acceptance began.

She has developed into a strong willed and very lovable young girl with a sense of humour, infectious laugh and bright smile. Her independent spirit is fierce and strong! She walks with a walker and uses a wheelchair over longer distances but never lets this stop her. She loves taking her dog for a walk and will always want to know if you have a dog too.

Lizzie attends her local primary school with her younger siblings, Caitlyn and Harry. The school fosters an inclusive and accepting atmosphere, striving for inclusion as every day passes. They spread such a special awareness of disability to other children and support Lizzie in all she does.
Lizzie loves to read Ella and Olivia stories and Billie B brown books. She loves anything with a screen, especially if Taylor Swift is on it. Most weekends you will see Lizzie playing netball (or soccer) at the local netball courts, riding around on her trike or swimming with family.

Like all those affected by KIF1A, Lizzie and her family hope for a treatment and cure of this horrible disease. Whilst it doesn’t stop Lizzie from living her best life, a life free from the pain and suffering KIF1A warriors experience, would be the best reality of all.