Rett Syndrome and Why It Matters to us 💜

Our why

In November 2013, we got the call. Our daughter Kenzie, then two and a half years old, had Rett Syndrome. We'd spent over nine months searching for answers, watching her miss milestones, hoping it was anything but Rett.

Rett Syndrome is a rare neurological condition that affects almost exclusively girls, caused by a mutation in the MECP2 gene on the X chromosome. It typically emerges between 12 and 24 months of age, often after a period of apparently normal development.

There are an estimated 400 girls and women in Australia today with Rett, and an estimated 280,000 to 400,000 girls and women are living with Rett Syndrome worldwide.

In the photo below, Kenzie is sitting in front of a Tobii eye gaze device, her window to communication. It helps her communicate by tracking her eye movements when looking at different pages and images, letting us know what she wants or needs. It's like her eyes are the mouse.
Kenzie wears hand covers to protect against the involuntary hand-wringing and biting that comes with Rett. She has suffered from stress fractures in her hands from the pressure he puts on them 💜

Girls with Rett often lose the ability to speak, walk, or use their hands with purpose; capabilities they likely already had but lose them during what's called regression phases.

Breathing irregularities, scoliosis, and seizures are common. Sleep disturbances and anxiety are also frequent, adding another layer of difficulty for both girls and their families.
But apraxia is Rett's most profound challenge. The brain struggles to send the right signals to the body, leaving girls trapped between intention and action. Kenzie knows exactly what she wants to do. Her body just won't always let her however her eye gaze device helps with these communication needs.

Despite these challenges, every movement and every attempt to connect is an act of determination. The Rett community, families, therapists, and researchers, works tirelessly to develop strategies that improve quality of life and even a cure. Each year brings new clinical research and adaptive technologies that open doors that Rett tries to close.

The Rett Syndrome Association of Australia supports girls and their families, funds clinical trials targeting Rett and its various manifestations, and grows awareness across the country.

Building Garame gave us the chance to give back in a way that means something. 5% of our profits are donated to the RSAA, because if there's research out there that might one day give Kenzie her voice back, we want to be part of funding it.

Now that you know about it, all we ask is that you tell one other person. 🫶🏼
Thank you so much for being part of our little journey. Kenzie, Lang, Pep & Steve

Our why

What is Rett Syndrome?

What are the effects of Rett Syndrome?

Why RSAA?

Why Rett Syndrome Matters to Us

Our why

What is Rett Syndrome?

What are the effects of Rett Syndrome?

Why RSAA?

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