Our Story

About Bryer

Bryer is our bright, funny, determined girl, and the heart behind Bryer Beats Rett. This is a little snippet of her journey.

Bryer as a newborn, held by her older brother Brecken

Bryer's older brother, Brecken (4), holding Bryer when she was a newborn.

To hear Bryer's story, check out this short 3-minute video from our December 2025 fundraiser, or read on below.

Schaffer family photo, November 2025
Bryer (9) and her family. November 2025.
Bryer getting ready for school, September 2025
Bryer (9) getting ready for school. September 2025.

Bryer's Story

When Bryer was born, everything seemed perfectly normal. We brought home this adorable baby girl, a good sleeper with the sweetest disposition, and she was hitting all her milestones. That first year felt like any other new baby season: messy and magical.

When we started noticing little things

Around her first birthday, we began to notice small changes. Some of her motor skills were progressing more slowly, and her muscle tone was different from one side of her body to the other. By about 18 months, we had a hunch something was going on.

Our pediatrician didn't see anything concerning, but our gut told us not to let it go. We got a second opinion, and that doctor immediately referred us to Seattle Children's.

The year of tests

What followed was a hard year of tests, appointments, and uncertainty. So many "it could be this, or it could be that." Bryer was difficult to diagnose because her regression was not typical. Instead of having a very noticeable period of regression, she plateaued in developing new skills around her first birthday. She had slow and steady progression through her second year, when she learned to walk. This atypical pattern made her diagnosis journey complicated, and it took a year and a full genome panel to finally give us an answer: Rett Syndrome.

Hearing those words was a strange mix of relief and devastation. Relief to finally know, devastation because it's a serious diagnosis.

Who Bryer is today

Today, Bryer is nine years old and in second grade. She's smart, funny, and stubborn in the best possible way. She can't speak with her mouth, but she uses her eyes, her body, and her talker to tell us what she wants.

And when she laughs, it's the best sound in our house.

What Rett changes (and what it doesn't)

Rett Syndrome is caused by a randomly occurring mutation in a gene called MECP2. It doesn't change who Bryer is, but it makes it much harder for her body to do what her brain wants it to do.

Bryer works incredibly hard every day. She spends a lot of time in therapies and appointments, and we're always doing what we can to help her feel strong, comfortable, and supported.

Bryer is not just Rett

Bryer is not just her diagnosis. She loves swimming, horseback riding, music, books, movies, playing outside, and being with friends and family. She has a way of connecting with people. Everyone just loves her instantly.

Bryer's village

Bryer also has a big team. Wendy has been her caregiver and our family hero for almost nine years, and she's surrounded by therapists, teachers, doctors, and a community of family and friends who show up for her.

It truly takes a village, and we're grateful for every person who learns about Rett, supports Bryer, and loves her.

Why we stay hopeful

Science is moving fast, and there is real momentum in Rett research. That's why we fundraise and advocate, to help accelerate the work that moves us closer to treatments and a cure.

Note: We are not medical professionals. This site shares personal experience and general information, not medical advice.

Bryer Beats Rett

Raising awareness, sharing hope, and following the science in the fight against Rett Syndrome.

Medical Disclaimer: We are not medical professionals. The information on this website is based on personal experience and general research. It is not intended as medical advice. Always consult with qualified healthcare providers for medical decisions and treatment.

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