Finding Our Moon’s Mission: to cure SPG56

The story of TALLULAH MOON

This year we will be dressing in rainbow stripes for #RDD2022. Would you like to know why?

In 2020 our family was growing just as we’d dreamed. Finn Atlas was a wild roaming three-year-old and at 14 months, Tallulah Moon was just starting to chase him around the garden. Life was a mix of kinder-chaos and rainbow joy.

But then one day Tallulah started to “walk funny”. Very suddenly, her legs stiffened. Her previously confident stride faltered; her tiny feet began to tip-toe, trip and scissor.

We tried hard not to panic as she resorted to crawling again. We sought medical advice but nobody knew what to say. We were scared, but naïve. We couldn’t imagine anything “really bad” happening to our child.

Within days, Tallulah could no longer talk or even hold up her head. When she started to choke on food, we hurled ourselves into an all-consuming state of terror. Our once carefree lives evaporated before our eyes. The rainbows had disappeared and dark clouds of fear rolled in.

We scrambled for referrals to neurologists and the MRIs. Nerve conduction studies and tests we couldn’t even pronounce were suddenly thrust upon our little girl. All we could do was try to help her feel safe, while we hid our angst and our deepest fears.

Finally, through sheer luck, Tallulah was included a Whole Genome Sequencing (WGS) study and on 26 August 2020, our baby was diagnosed with Hereditary Spastic Paraplegia Type 56 (SPG56).

Tallulah was the first SPG56 diagnosis in Australia, and the doctors had very few answers for our many desperate questions. The prognosis was vague and ominous. There was no known treatment or cure. In short: we were terrified.

To cope, we began connecting with other families whose children are living with rare genetic disease. We eventually found our SPG56 tribe, dotted around the globe. Soon, we discovered a collective hope to find a cure for incurable diseases.

It is common knowledge that rare diseases don’t attract sufficient research funding. But when we learned about many incredible research projects parents had crowdfunded to find gene therapies and repurposed drugs to combat rare genetic diseases, we were inspired.

In 2021, after a long road of research ourselves, we launched a registered charity called Genetic Cures for Kids Inc. and its first mission is Our Moon’s Mission: to cure SPG56.

Tallulah Moon was born with a progressive disease, but through fundraising for modern genetic research, we hope to find a cure for SPG56 that might help Tallulah and other children like her. She is a beacon of light and hope; a rainbow that brightens our days and gives us purpose.

Our campaign supporters called #TallulahsArmy and we are a colourful, eclectic bunch. This year we are collectively celebrating Rare Disease Day all across the globe by encouraging school classrooms and offices to ‘show their stripes’ in rainbow for Tallulah and the children of #RareDiseaseDay2022. With Rare Disease Day, we hope to raise important awareness about rare diseases, while celebrating the colour, joy and inspiration our rare children bring to our lives.

We believe we are stronger together as we navigate our unique worlds of rare disorders and conditions. If this short journey thus far has taught us anything, it is that communication is key and hope is paramount.

If you know somebody living with SPG56, please encourage them to reach out.

Our Moon's Mission, Genetic Cures for Kids