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Navigating the Complexities of Costello Syndrome

Updated: 7 days ago

There are stories that inspire, stories that challenge, and stories that simply must be heard. Today, we bring you the heartfelt testament of Amber, a devoted mother and caregiver, whose journey with her daughter Ryiah is nothing short of extraordinary.


Ryiah, a radiant soul, entered this world with a unique set of challenges. From the moment she took her first breath, she embarked on a complex journey, facing breathing complications and a myriad of medical complexities. For her parents, Amber and Jarael, this marked the beginning of an odyssey filled with uncertainty, fear, and unwavering determination.


Ryiah's has a vibrant spirit, despite her physical limitations. At just under three years old, Ryiah, though small in stature, radiates joy and brings light to even the darkest of days. She thrives on love, attention, and the simple pleasures of life – from the gentle breeze to the infectious melodies of The Wiggles.


But behind Ryiah's infectious smile lies a world of medical appointments, specialists, and endless questions. Navigating the complex healthcare system became a daunting task, with over 18 specialists and a plethora of therapies to manage. Each appointment felt like a live game show, with doctors asking the same questions repeatedly, leaving Amber and Jarael feeling overwhelmed and exhausted.

The turning point came when Ryiah was diagnosed with Costello Syndrome, an ultra-rare genetic disorder (1-300,000).  It happens when there's a change (mutation) in a gene called the HRAS gene. This happens in a child's DNA before birth. Costello syndrome causes problems that affect the heart, muscles, bones, skin, brain, and spinal cord.


Finally, they had a name for their daughter's condition. Yet, with less than 1,000 cases worldwide and Ryiah being the only recorded variation of its kind, Amber and her family found themselves back at square one, seeking answers and treatments in uncharted territory.


Amidst the chaos and uncertainty, Amber longed for a lifeline, an assistant with a photographic memory to accompany them to every medical appointment, remembering each doctor's plan of care with precision. And then, she discovered mejo – a revolutionary app that would change the way they managed Ryiah's care.

mejo became Amber's virtual assistant, a repository of invaluable information at her fingertips. With just a few clicks, she could access Ryiah's medical history, medications, and treatment plans, empowering her to be her daughter's strongest advocate. No more frantic searches through patient portals or juggling countless papers – mejo streamlined their journey, giving them the peace of mind they so desperately needed.


Amber told us that she had a Brain and Spine MRI via anesthesia coming up in the next few weeks. For her to be able to get approved for the anesthesia, they had to have a complete medical history. For most this is simple, for Ryiah and other kids with Costello Syndrome this is a very large ask as she’s had more than 30 procedures since birth, at least 12 surgeries, and several handfuls of medications over her short 3yr lifespan. She was able to pull up her mejo app and give the answers for the complete history in minutes!


Rather than the typical days it would have taken me to hunt all the pertinent info down. “mejo is a true-life saver!”“mejo is the first app or program I have been able to find or heard of that can be that assistant I am looking for! A place I can go to answer any questions the Dr’s/nurses ask, within moments. I can hand them my phone with the app pulled up and all the info they are requesting right there.”


“Here Doc, read this, then ask me what you need to”. ‘’ I am just learning about this app. But I am beyond excited for the possibilities it holds for our future. The thought makes me tear up.  That may seem dramatic, but I am telling you, it’s not. For me not to have to remember every single weight, measurement, dosage, strength, Dr name, condition name, plan of care recommendations. I mean, this is priceless information for me to not have to remember but simply click a button to gain immediate access to! I’m basically sending my brain on a vacation while the app takes over. It may take a few extra moments to input all the info initially than anyone cares to do, but once it’s in, it’s in! For good!”

As Amber looks to the future, she sees endless possibilities with mejo by her side. The thought of relinquishing the burden of remembering every detail fills her with hope and gratitude. With mejo, she can send her brain on a well-deserved vacation, trusting that her daughter's care is in capable hands.


Amber and Ryiah’s story is a testament to the resilience of the human spirit and the power of technology to transform lives. In her journey with Ryiah, she has discovered strength she never knew she had and a community of support that extends far beyond her wildest dreams.

“Ryiah is Pure Joy. She can bring happiness to the worst of situations. She’s adored by her family, community and strangers that make her acquaintance. She is often referred to as “the cutest centerpiece”. Says Amber

 

To learn more about Costello Syndrome: https://costellosyndromeusa.org

mejo is a caregiver’s assistant that provides support for caregivers, rapid insights for sponsors and deeper engagement for communities.


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