03/05/2026
1 year ago, none of this was happening with any ease, strength, or endurance. Rest breaks always needed from standing or walking more than a couple of blocks.
Last June, we made small but intentional adjustments to Sophie’s medical protocol. Those tweaks changed everything. Since then, she’s become stronger, faster, more mobile, less fatigued, and is truly thriving. The difference in her daily life since those changes has been remarkable.
Her care is built around a custom protocol shaped by the evidence her own body has given us. A combination of treatments that address different symptoms, helping her do something we never dreamed would be possible: move freely, without pain. Most days now, she’s going to school, walking and running without wearing braces at all.
Watching her move through the world with this kind of freedom is something we will never take for granted. We have no idea if it will last.
Our research journey is far from over. But there is real hope. Institutions and companies have developed MCTO model systems and are studying this disease in ways that simply wasn’t happening before. We’ve learned the lesson that “just because you have more data, doesn’t mean you know more.” But we keep pushing, and inching forward.
Another thing we’ve learned along the way: trying to solve a rare disease the “traditional” way rarely works, and would not work for us.
Instead, we:
Surround ourselves with smart people.
Take thoughtful, measurable risks.
If something isn’t working, change it.
There is no time to wait.
Doing the same thing again and expecting different results, or waiting for the answer to appear, cannot be the approach.
So we lean in. We listen. We monitor. We adjusted.
This past year has been a burst of strength, mobility, and positivity for Sophie, and we cherish every single day. In a world that feels very uncertain, scary and heavy; her personal progress is a small but powerful ray of sunshine we can all hold close.
We don’t know what Sophie’s life would look like without these changes. But we do know this: watching her run, play, and explore the world today makes every step of this journey worth it. 💛
