Hi, my name is Noelle, and I’m Remi’s mom.

Our daughter Remi was diagnosed with CTNNB1 syndrome, an ultra rare genetic condition with fewer than 500 diagnosed individuals worldwide. Before Remi, I had never even heard those letters. Now they shape every part of our lives.

CTNNB1 affects development, muscle tone, speech, and mobility. Milestones that come naturally to many children, sitting, walking, speaking, require months or years of intensive therapy for Remi. Every sound, every small movement, every new skill is hard earned through determination and daily work.

Remi works harder than most people realize. Her days are filled with physical therapy, occupational therapy, speech therapy, specialist appointments, and ongoing evaluations. Behind the scenes, we are constantly advocating, researching, coordinating care, and fighting to give her every opportunity possible.

While insurance helps with some basics, it does not cover everything Remi needs. Many therapies, specialized equipment, travel to appointments, adaptive tools, and future medical interventions come with significant out of pocket costs. As we look ahead, we are also trying to prepare for long term care and support in a system that can be incredibly difficult for families like ours to navigate.

This journey is beautiful and heartbreaking all at once. There is grief for the ease we once imagined for her. There is fear of the unknown. But above all, there is Remi’s light, her joy, her resilience, her unstoppable spirit.

She is not defined by a diagnosis. She is defined by her courage.

We are asking for help to continue funding

• Ongoing therapies not fully covered by insurance

• Specialized medical care and evaluations

• Adaptive equipment and communication tools

• Travel expenses for appointments and specialists

• Future treatment opportunities as research advances

Every donation, every share, every prayer helps lighten the weight and moves us one step closer to giving Remi the best possible chance at independence and quality of life.

Thank you for loving our girl. Thank you for believing in her future. And thank you for helping us fight for it.