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A Mother and Daughter's Rare Journey: Navigating the Diagnosis Sea

Updated: May 23

In the vast expanse of the medical world, a journey towards diagnosis can often feel like navigating the open seas without a compass, fraught with uncertainty, fear, and countless unanswered questions. For Kristen A. and her spirited daughter Ellie, this journey has been a test of resilience, patience, and unwavering determination.


Check out Effie Parks Diagnosis map:




 

Meet Ellie – a vivacious six-year-old with an infectious love for monkeys and an affinity for fidget toys. Behind her radiant smile lies a story of courage that transcends her tender age. For the past two years, Ellie's health has been on a downward spiral, shrouded in mystery, as Kristen tirelessly sought answers to the perplexing array of symptoms plaguing her daughter.

 

After enduring a marathon of hospital visits, consultations, and evaluations spanning multiple institutions, Kristen's quest for clarity finally bore fruit. Recently, the elusive puzzle piece fell into place as Ellie received a diagnosis of dysautonomia – a condition affecting the intricate web of nerves governing the body's involuntary functions, including heart rate, digestion, and blood pressure.

 

The road to diagnosis was anything but smooth sailing. Kristen recalls the countless hurdles they faced along the way – the moments of despair, the nights spent anxiously poring over medical journals, and the relentless pursuit of medical professionals who could offer insight into Ellie's condition. Yet, amidst the chaos, Ellie remained a beacon of positivity, her resilience serving as a source of inspiration for her weary mother.

 

In the whirlwind of appointments and hospitalizations, Kristen discovered a lifeline that eased the burden of managing Ellie's complex medical needs – mejo, a comprehensive journaling tool that became her trusted companion throughout their journey. With mejo in hand, Kristen could effortlessly organize vital information – from medications and specialist details to procedures and g-tube sizes – providing medical professionals with a holistic view of Ellie's health history at a glance.

 

Beyond its practical utility, mejo symbolized something far more profound – a testament to Kristen's unwavering commitment to advocating for Ellie's well-being. In a healthcare system often characterized by fragmentation and bureaucracy, mejo served as a tangible reminder of the power of proactive engagement and personalized care.


As Kristen reflects on their journey, she is filled with gratitude for the unwavering support of friends, family, and the medical community who stood by their side every step of the way. With Ellie's diagnosis serving as a beacon of clarity, they now embark on a new chapter – one defined by hope, resilience, and the boundless possibilities that lie ahead.

 

Their story serves as a poignant reminder that behind every diagnosis lies a journey – a journey marked by courage, perseverance, and the unbreakable bond between a mother and her daughter. In the face of adversity, Kristen and Ellie's story stands as a testament to the power of love, resilience, and the relentless pursuit of answers in the pursuit of healing.


Kristen’s favorite mejo feature: The med list section.


Ellie takes 18 daily meds and 33 doses of meds a day. She has a lot of other PRN meds too. Being able to easily see them and hand them to Drs makes everything so much easier. 



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