Many of you already know that our little champion Charlotte was diagnosed with a devastating and life limiting rare disease called Cockayne Syndrome. It is a form of childhood dementia.

We’d never heard of it before the diagnosis, but learnt pretty quickly that it is a particularly cruel condition that will limit her growth and development, then deteriorate her body and mind over time, with a life expectancy of between 10 and 20 years.

Our little family of 4 has been on quite the journey these last 2 years, but with every step, we've witnessed the determined spirit that Charlotte embodies, defying the odds with her infectious smile and unyielding courage. Our job as her parents, is to support her in every way we can, to give her the best possible life.

This includes advocating for change as best we can, to help make a difference for children like Charlotte. We hope for a better future for all of them. They deserve so much more.

We fundraise from time to time to support our beautiful girl. Your generous donations are used to support Charlotte directly (where funding is not ready provided through NDIS) or to donate to charities that support children like Charlotte (e.g. Riaan Research Institute, attempting to develop a gene therapy for Charlotte’s condition).

Your contribution is so meaningful to us and will make an impact, whether you donate a lot or a little.

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@charlotte.vs.world on Insta.

❤ her. Follow her. Share her story.

SMH Article

SBS Article