18/10/2025
Thanks for this post Rett dad of Alex - Rett does continue after childhood! Spotlight on our 💜💪🫶
Rett Syndrome Awareness: What Happens When Our Warriors Grow Up? 💜
When most people hear Rett Syndrome, they picture little girls — the pigtails, the sparkly shoes, the early regression, the first seizures, the therapies that begin when hope still feels new. But what many don’t realize is that Rett Syndrome doesn’t disappear at 18, or 25, or even 40. Our girls grow up. They become women. Some even become senior citizens. And with that, the story of Rett continues — quieter maybe, but no less sacred.
As a Rett dad, I’ve seen firsthand how the spotlight of research, funding, and support often shines brightest on childhood — the years when intervention seems to hold the most promise. It makes sense. The focus on a cure and early treatment is crucial. But there’s another truth that can’t be ignored: our adult warriors are still here. They are still fighting. And many families are walking this journey decades longer than most people realize.
We’re seeing more adults with Rett Syndrome than ever before — a testament to better medical care, stronger advocacy, and sheer love that sustains life against the odds. But with longer lives come new challenges: aging bodies in wheelchairs, changes in bone density, heart and respiratory health, hormonal shifts, caregiver fatigue, and the loss of pediatric specialists who’ve walked the journey since diagnosis. Too often, adult care becomes a maze — a patchwork of providers unfamiliar with Rett’s complexities, leaving families to bridge the gap alone.
The truth is, Rett care doesn’t end when childhood does. It just changes. The goals shift — from gaining skills to maintaining them, from early intervention to comfort and dignity, from discovery to endurance. Every breath, every laugh, every glance still matters.
And yet, in those moments, our adult Rett community teaches us something profound — that even when the world forgets, love doesn’t. Connection doesn’t. Presence doesn’t. These women, these men — these Rett warriors — are living proof that quality of life isn’t measured by words or milestones, but by the quiet grace of simply being here.
As research continues, we must also widen our vision — to include the adults who paved this path. They are the reason we know what we know today. Their lives built the foundation for gene therapy, for better understanding of MECP2, CDKL5, and FOXG1 disorders. Their parents, often in their 60s, 70s, and beyond, are still caregiving every day — quietly, faithfully, and often alone.
To every family walking this long road — you are not forgotten. Your warrior matters. Your story matters. Your love has shaped the landscape of Rett Syndrome for generations to come.
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