A Voice for Maddie Lou: Empowering Families Facing Rare Disease

Written by: mejo

In the world of caregiving, few journeys are as profound and transformative as Adrienne's with her daughter, Madeleine, lovingly known as Maddie Lou. Maddie Lou is a bright, tenacious, and joyful four-year-old with a spirit that lights up every room she enters. She loves her classmates, and has built a community of caregivers, nurses, doctors, and therapists who have become part of her extended family.

But Maddie Lou’s journey is one marked by unexpected challenges. At 16 months old, she was a healthy, neurotypical toddler. Just four months later, she received a life-altering diagnosis: Atypical Rett Syndrome. Now nonverbal, Maddie Lou has limited use of her hands and cannot walk independently. But that doesn’t stop her. Each day, she courageously practices in her gait trainer, scooting, crawling, and even taking up to 120 steps—a testament to her resilience.

“Maddie Lou is tenacious, funny, witty, and smart. She has the heart of a fighter and the soul of a saint.” — Adriene

Navigating the Dual Role: Mom and Caregiver

For Adrienne, being Maddie Lou’s mom and primary caregiver is a journey filled with every emotion imaginable.

“I go through every emotion every day, because I’m not just a caregiver. Maddie Lou is MY girl, my daughter, my one and only, my bestie for the restie.”

Adriene’s life is a delicate balance of love and resilience. Some days, she feels like she can conquer the world. Other days, the weight of caregiving feels like holding the world on her shoulders. Yet, she continues—one day, one moment at a time—fueled by the unwavering love she has for her daughter.

“You literally give up your life happily for them,” Adriene shares. “But it’s hard when motherhood and caregiving blend. You hold them when things aren’t going right, and you wish someone would hold you too. But you keep going, because your child is the reason for it all.”

A Day in the Life: A Caregiver’s Routine

Adriene’s daily routine is a whirlwind of love, care, and constant support. Her day begins at 4:30 a.m., starting with a diaper change, G-tube cleaning, and Maddie Lou’s first round of medicine and nutrition. After a brief breakfast, Maddie Lou’s day includes school, therapy sessions, and more feedings. It’s a delicate dance of caregiving, advocating, and finding moments of joy amidst the challenges.

But Adriene’s responsibilities don’t stop there. In between therapy sessions and meal preparations, she’s fighting insurance companies, managing prescriptions, and staying in constant communication with doctors. It’s an unrelenting schedule that can be overwhelming, but Adriene has learned to find strength in the little victories—like Maddie Lou’s radiant smile or her determined scoots across the floor.

Finding Support with My Rett Ally

Navigating Maddie Lou’s care is complex, but Adrienne has discovered a new source of support: My Rett Ally. As a new user of the app, she is already experiencing the benefits of having all of Maddie Lou’s critical information in one place.

“I’m still working on the different features, but I can tell you—this has been very helpful,” Adriene shares. “As many times as I have to repeat her story or re-explain it, My Rett Ally has saved me time, which in turn keeps stress levels down. That alone is worth its weight in gold.”

For Adriene, My Rett Ally isn’t just an app—it’s a lifeline. It simplifies communication, reduces stress, and ensures that Maddie Lou’s care is consistent, even across different providers. It transforms her role from an overwhelmed caregiver to an empowered advocate for her daughter.

Make sure you check out the new Visual Narrartives feature in the app

A Community of Strength and Love

Adriene’s journey with Maddie Lou is one of fierce love, unwavering resilience, and the power of connection. As she continues to advocate for her daughter and ensure she receives the best care possible, Adrienne is a reminder that caregiving is not just a responsibility—it’s an act of love that transcends every challenge.

“My Rett Ally has been a tool to help ease collaboration, solve communication issues, and bring peace of mind. It’s simplistically brilliant.”

In sharing their story, Adriene and Maddie Lou continue to inspire others, showing that even in the face of adversity, love always finds a way.