Amelia’s Cycle Squad

Our Story - Why We Ride this October

Meet Amelia! Amelia is 7 years old and lives with her family in Werribee, Victoria. She is funny, adventurous, couragous, inquisitive. She lights up around people and loves school! Her favourite things include puzzles, boardgames, baking, riding her bike, bouncing on the trampoline, painting and drawing, taking photos on her iPad, music, the beach, swimming pools, Bluey, The Wiggles & Paddington Bear. Most of all, she adores her big brother, Ollie!

In January 2019 our world was torn apart when told by Specialists our beautiful 5 month baby girl had been born with complex brain malformations. Here began the rollercoaster. Seizures began soon after with what felt like endless trips in the back of ambulances to emergency re-sus wards and hospital admissions. Early Intervention therapies took over our life. 5 years down the track we finally received Amelia’s genetic diagnosis of TUBA1A-related Tubulinopathy. Amelia’s TUBA1A variant has caused Lissencephaly type 3, Cerebellar Hypoplasia, Complete Agenesis of the Corpus Callosum, Microcephaly et al. This in turn has resulted in epilepsy, global developmental delay, intellectual and physical disability. 

TUBA1A is ultra rare, with less than 20 other known cases in Australia, approx 500 globally. Amelia’s particular variant of TUBA1A, we know of only 2 other children world-wide. Due to there being such limited knowledge around TUBA1A, the prognosis is unknown, there is no known cause and no cure.

Every day we get to share with Amelia is a blessing and she fills our hearts with so much joy. Her spirit and determination is infectious. Her diagnosis however also brings overwhelming grief, stress & isolation that can only be understood by other families living a similar path. This is where Brainwave has become such a vital source of support to us.

Brainwave has given our family the opportunity to have experiences and respite we wouldn’t otherwise get, in a supportive, understanding, and inclusive environment, especially without fear of judgement. Over the past 18 months we have attended Camp Brainwave, Luna Park Christmas Parties, Mum’s Night Paint & Sip, Gumbuya World Family Day and a Werribee Zoo Family Day.

These events create a space for Amelia to try new things, for her brother to form and strengthen friendships with other young carers, and for us to relax, laugh, and simply enjoy the moment. Through these events, we have met so many beautiful families and built new friendships. 

Riding for us is about inclusion, raising awareness of brain conditions, and giving back. Brainwave is such an incredibly important organisation, we hope to raise funds that will enable them to continue their amazing work in supporting other families through funding therapy, equipment, hospital support, and family connection for children like our Amelia.

Amelia is participating in this year’s Ride for the Kids along with her team on her adaptive trike. If you do see her out & about, riding along Werribee River or down to Watton Street for a hot chocolate, please come say ‘hi’ & cheer her on!