Carli's Rett syndrome journey

Carli is our 4 year old daughter that was diagnosed with Rett syndrome in July 2024.

Hearing the word ‘Rett syndrome’ for the first time was a defining moment for us.

When our daughter was diagnosed with Rett syndrome, it felt like the ground beneath us crumbled. We had so many questions with no answers yet, we mourned the loss of our little girl we would never have. 

Our little girl has Rett syndrome, but it does not define her and it does not change her soul.

Carli has an impact on every person she meets, her smile, the way she communicates through her eyes makes everyone fall in love with her and makes a lasting impact that no one will ever forget.

She has a bubbly personality and will light up any room she is in (without saying a word) 

Rett syndrome is a rare genetic neurodevelopmental disorder that primarily affects girls, causing them to lose language and motor skills after a period of normal development in infancy. It's caused by a mutation in the Read More