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The Journey of Shannon and Ellie: Embracing Life with Rett Syndrome

Life often takes unexpected turns, leading us down paths we never imagined. For Shannon, the mother of an extraordinary eight-year-old girl named Ellie, this journey began with a diagnosis that changed everything: Rett syndrome. Today, I am honored to share their story, a tale of resilience, love, and the unyielding strength of a mother and daughter navigating the challenges of this rare genetic disorder.


Discovering Rett Syndrome

Ellie is eight years old, and she will be celebrating her ninth birthday this month on May 22nd. Her journey with Rett syndrome began when she received her diagnosis just four days after her second birthday, in May of 2017. Before her official diagnosis, Ellie faced many challenges, but she found happiness in walking and climbing She delighted in standing on high surfaces and could spend hours on top of the hope chest, "talking" and smiling. However, everything changed in 2020 when debilitating seizures and the effects of a specific seizure medication took away her ability to walk independently.

 

Ellie has faced numerous challenges since then. She has undergone multiple surgeries for various issues related to Rett syndrome and can no longer use her hands to play with toys or feed herself. Intractable epilepsy and many types of seizures are a constant part of her life. Despite all these hurdles, Ellie remains a happy ray of sunshine. She is smiley, full of snuggles, and loves the water, especially swimming in her pool. Music brings her immense joy, with Ed Sheeran and Imagine Dragons being her favorites. Attending concerts is a special treat for Ellie.

 

The Realities of Caregiving

 

Being a caregiver is an everyday job. There are no days off. “Although it is a great privilege to be able to care for someone as amazing as Ellie, it also comes with exhaustion, fear, and living in a state of anticipatory grief. It is taxing emotionally and physically to care for someone who is completely dependent on you in every way.

 

"You can no longer function like a typical family. Everything requires extra preparation or steps, from something as simple as leaving the room to shower (what if she seizes, what if she stops breathing, what if she needs me), to things like attending a siblings sporting events (will we be home in time for nightly medications, where will I change her if she has a wet diaper or God forbid a bowel movement, will I be able to maneuver her wheelchair easily in the gym/ at the football field/ by the bleachers in the grass), and things more complex like traveling require an insane amount of prep and work that I could write an entire book on. Being a caregiver also makes it very challenging to balance a career.”

 

The Role of Technology: My Rett Ally powered by mejo

In their journey, technology has become an invaluable ally. One remarkable tool that has made a significant difference in their lives is the "My Rett Ally" app. Developed by mejo and sponsored by the International Rett Syndrome Foundation (IRSF), this app is designed to support families like Shannon and Ellie, offering a wealth of resources and a community of support.


Shannon was part of a pilot program with the IRSF to test My Rett Ally and immediately recognized its potential as a game changer. The app provides personalized care plans, tracks symptoms, and connects families with experts and other caregivers. Shannon loves all its features, but the sharing feature stands out as her favorite. Before My Rett Ally, she tried to keep a binder updated with Ellie's medical information. Now, she has all the information at her fingertips, easily accessible through her phone.

 

Shannon has used My Rett Ally at doctor’s appointments, with caregivers, and with parapros at school. The ability to update and share information without carrying a physical binder is invaluable. The app makes it convenient to provide accurate and up-to-date information at a moment's notice, which is especially crucial during emergencies or medical visits.

 

“My Rett Ally is a game changer in this Rett life and is something that actually makes life easier for parents and caregivers. I’m grateful for it.” Says Shannon

 

A Future Full of Hope

Despite the daily struggles, Shannon and Ellie’s story is one of hope and perseverance. Shannon dreams of a future where advancements in research and technology bring new treatments and maybe even a cure for Rett syndrome. Until


then, she remains committed to giving Ellie the happiest, most fulfilling life possible.

 

Ellie’s laughter, her bright eyes full of curiosity, and her unbreakable spirit inspire everyone who meets her. She may face immense challenges, but with Shannon by her side and the support of tools like My Rett Ally, Ellie is not defined by her syndrome. She is a vibrant, unique individual with a lot of love to give and a world of potential to explore.

 

In sharing Shannon and Ellie’s journey, we are reminded of the power of love, the importance of community, and the incredible impact of innovation in transforming lives. Their story is a beacon of hope for all families navigating the complexities of Rett syndrome, proving that even in the face of adversity, there is always light and possibility.

 

Interested in learning more about the web-based app or creating an account for a Rett warrior in your life? Learn more at rettsyndrome.org/myrettally or visit myrettally.mymejo.com and click on “Let’s Get Started!” to sign-up for free. It just takes a few minutes to get your account created.

 

About mejo

There are more than 300 million people in the world living with a rare disease. More than half are kids with caregivers doing all they can to provide the best life possible for them.


The mejo app was created to help these caregivers with all of their caregiving activities each and every day. Caregivers and families call mejo "a game changer" as it helps them coordinate care, organize their medical + care information and save time by simplifying their lives.


mejo is honored to collaborate with IRSF on a Rett-specific platform called My Rett Ally. For more information on bringing mejo to your community, send us and email at contact@mymejo.com


 

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