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A routine string of toddler troubles—ear infections, poor sleep, constipation—hid a rare diagnosis that would change everything. When Lydia tested positive for Sanfilippo syndrome (MPS III), her mom, Morgan, refused to accept “go home and love her” as the final word. You’ll hear how a nurse-mom turned her grief into a plan, translating complex genetics into a clear mission: fund access to gene therapy before regression begins around age four, when speech and skills start to fade.

We walk through the essentials in plain language: how missing enzymes let heparan sulfate build up in the brain, why clinical trials fill fast, and what a breakthrough designation really means for speed and access. Then we dig into the real bottleneck—the multi-million-dollar manufacturing cost that stands between children and treatment while the FDA review progresses. Morgan shares how three TikToks with zero followers exploded into millions of views, national coverage, and a focused giving strategy: if the crowd sends $16, a six-million-dollar mountain turns into steps we can all climb.

This is a story about faith, evidence, and community doing what bureaucracy can’t do fast enough. You’ll hear the Godwinks that kept Morgan moving, the Cajun community throwing benefit after benefit, and the coalition of families raising funds for roughly fifteen kids, not just one. The goal is urgent and specific: keep Lydia’s bright three-year-old mind safe long enough to receive a therapy that could change her trajectory. If rare disease, gene therapy, and real-world impact matter to you, this conversation offers a blueprint for action—and a reminder that small gifts can become big medicine.

Help us spread the word, share the $16 idea, and if you’re able, give to Lydia’s fund. Subscribe for more human stories at the edge of science, leave a review to boost the signal, and tell a friend who cares about turning hope into outcomes.

Go Fund Me Link HERE

https://cajunmamas.com/

YouTube:
https://www.youtube.com/@CajunMamas

Sara
https://www.facebook.com/lllippylady
https://www.instagram.com/lllippylady/#
https://www.tiktok.com/@lllippylady

Koa
https://www.facebook.com/kgmelancon
https://www.tiktok.com/@koa.melancon
https://www.instagram.com/k_melancon/