Autism, Parkinsons, Epilepsy, Cerebral Palsy and Anxiety, all in one little girl.

Why Rett Syndrome?

One fateful day in November 2013 my wife, Lang, received a call to confirm our then 2-and-a-half-year-old daughter, Kenzie, had Rett Syndrome. It had been over 9 months of waiting for an answer on why Kenzie wasn't hitting the usual milestones. We were hoping it was anything but Rett...

What is Rett Syndrome?

Rett Syndrome is a rare neurological disorder that affects how the brain matures and develops. It causes a progressive loss of motor skills, speech, and other normal functions and capabilities. Learn more about the underlying cause of Rett Syndrome.

Rett is most common in girls. It becomes apparent within the first two years, with parents noticing a slowing of development or even a loss of skills their child already had. Although Rett Syndrome affects no two girls or women in the same way, they experience common impacts. They often lose the ability to speak, walk, or use their hands with purpose. Scoliosis, or the curving of the spine, and seizures are also common. By far, though, Apraxia is Rett's most fundamental and severe aspect. It means that even though the girl wants to move a certain way or do a specific task, her brain has trouble sending the right messages to her body. So, she cannot control her body to do what she desperately wants.

Despite these challenges, every movement and every attempt to interact is a testament to their resilience. The Rett Syndrome community is a testament to hope. Families, therapists, and researchers collaborate to understand and manage the condition and its affects. Each day brings new learning and adaptive strategies that can improve the quality of life for those with Rett Syndrome.

Why RSAA?

The Rett Syndrome Association of Australia provides support to Rett girls and their families as well as bringing clinical trials to Australia that target Rett and its various manifestations. RSAA also helps spread awareness of Rett Syndrome.

Juijitsu has been a huge part of my coping journey with Rett Syndrome. With Garame Cleaning Co, I'd love my BJJ community, and the broader martial arts community, to learn a little about Rett and help give back.

Thank you so much for being part of our little journey.
Kenzie, Lang, Pep & Steve