Single Mum Fighting for Her 16-Month-Old Daughter Diagnosed with Rett Syndrome

A week ago, my world was turned upside down. My beautiful girl Ciera Grace was officially diagnosed with Rett Syndrome. This extremely rare and spontaneous neurological disorder means she will face significant challenges with movement, communication, breathing, and development as she grows. She will never be able to live independently.

There is no cure and no treatment available, only management.

Those who know us in person know that Ciera is my life, and I am wholeheartedly dedicated to her. At the beginning of the year, we fled our previous home due to family and domestic violence, and we have only recently settled into our new life together. To now receive this diagnosis is just world shattering.

I am still in shock and trying to process what this means for our future, but one thing is clear — I will fight with everything I have to give her the best possible life.

Our days are now going to be filled with medical appointments, assessments, early intervention therapies, and learning how to support her changing needs. Rett Syndrome often brings unexpected medical costs, specialised equipment, home modifications, and therapies that aren’t always fully covered by the NDIS.

Here’s how your support would help us right now:

Covering lost income while I focus entirely on Ciera’s care

Funding essential therapies (physiotherapy, speech therapy, occupational therapy, hydrotherapy)

Medical expenses, medications, and specialist visits

Any adaptive equipment or tools recommended by her care team

Everyday living costs so I can keep us stable during this overwhelming time

We don’t have much physical support nearby and I’m doing this completely on my own. Every single donation will go directly toward giving Ciera the opportunities she deserves. Even if you can’t donate, sharing this page would mean the world to us.

Thank you from the bottom of my heart for taking the time to read our story.

With endless gratitude,

Celine & Ciera