- Patient Story
Taking the Next Step: Sherri Brady on Parenting, Advocacy and Her Family’s Rett Syndrome Journey
By Sherri Brady, advocate and parent to Lauren, who lives with Rett syndrome
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Like most new parents, I looked at Lauren when she was born and imagined a future full of possibilities. I remember thinking, I've got this happy, healthy baby, and a life of loveliness is in front of us. Looking back, I can say that was true. The life we found simply looks different from the one I first imagined.
The Search for a Diagnosis
When Lauren was around six months old, it became clear she wasn't developing as expected. She wasn't reaching milestones, and nobody could tell us why. Doctor after doctor assured us that children develop at different rates and that Lauren would catch up. But my instincts told me something was wrong, and I kept searching for an answer.
When she was 18 months old, we finally found a physician willing to take a deeper look. After reviewing Lauren’s records, he told me, "I’m not certain yet, but I think it may be something called Rett syndrome." As he talked, I began to cry. All I could hear were the limitations that might lie ahead. I hoped it was something else, something a pill or therapy could make go away. By the time Lauren turned three, genetic testing had confirmed the diagnosis.
“I looked at Lauren and made a promise: we would figure this out together. We didn't need all the answers. We only needed the courage to take the next step. And that’s exactly what we did.”
Building Community for Rett Syndrome Families
People often ask how I became an advocate. My answer is always the same: I didn't set out to be one. I set out to be Lauren's mom. When your child communicates differently, you learn to advocate so that her voice is recognized and understood. You learn how to navigate healthcare systems, individualized education plans, therapies, equipment approvals and support services.
Searching for control and help, I began to understand the strength of the Rett syndrome community. I also discovered something I could do: bring people together. What started as a simple picnic for Rett syndrome families eventually grew into the SoCal Strollathon, a community event that has connected families for more than two decades. The most meaningful part has always been watching families realize they're not alone. Friendships form, experiences are shared and a difficult journey feels a little more manageable.
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“Advocacy doesn't have to mean testifying before legislators or serving on multiple committees. Sometimes it means participating in a clinical trial or joining a family advisory council. Sometimes it's helping another parent prepare for an Individualized Education Program (IEP) meeting or sharing your story with someone who feels alone. As I often tell families, "Do what you can, when you can."
Those efforts matter because they help create a better future for families affected by Rett syndrome. Of course, we all want a cure. I look forward to the day when no child or family has to face the challenges of Rett syndrome. Until then, families still need support today.
For Lauren and others with Rett syndrome, everyday activities can require extraordinary persistence. Many things that others take for granted, such as communicating, moving, learning and participating, can require tremendous effort. Yet people with Rett syndrome continue to show resilience every single day. I remember when Lauren was little and became fascinated with the spring doorstops behind the doors in our house. Before she learned to crawl, she would roll across the room to find them and make them vibrate. Then one day, after she had started crawling, I realized she had disappeared and found her happily exploring another room. It may sound like a small thing, but moments like that felt enormous. They reminded me not to take any milestone for granted and never to underestimate what Lauren might accomplish.
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“If you've met Lauren, you know she loves an adventure. Whether it's traveling, horseback riding, adaptive skiing or trying something completely new, her attitude is usually, "Let's go." As I often joke, name the adventure and Lauren has probably tried it. If she hasn’t, she’ll want the chance to do it, whether I’m ready or not.”
If there’s one thing I hope families take away from my story, it’s that you don’t need to have all the answers today. Whether you’re facing a new diagnosis, advocating for your child, participating in research or simply trying to get through a difficult moment, focus on the next step. Life be lifin’, as I often say. Some days will be harder than others, but every step forward, no matter how small, is just that.
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