Heather Roach, AAC Experience

She has been working toward this for nine years. She also got to decide whether you’d see it. She gave a huge, proud, yes.

Daily work at home, weekly PT, standing frames, gait trainers, AFOs, stretching braces, Rett Clinic, an amazing team, drug trials, and Daybue — the first FDA-approved treatment for Rett syndrome.
Nine years of showing up, every single day.

She is so proud to move that gait trainer on her own. As she should be. That gait trainer isn’t a limitation, it’s her independence. Equipment isn’t something that holds her back, it’s what sets her free.

She’s been told what she couldn’t do. She keeps showing up anyway.

This is what Rett syndrome looks like. This is what disability looks like. This is what fighting for your life looks like — not in a tragic way, but in the most human, determined, joyful way I know.

She fights for movement. She fights for communication. She fights for everything most of us never think twice about.

I share our life here because the world needs to see what a full, complex, fighting life actually looks like — and because so few people understand what Rett syndrome, AAC, and real disability look like from the inside.

If you’re walking this road, as a parent, a therapist, a teacher, you’re not alone. Follow along. This is what I do and why I do it. 💙

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