Navigating Life with Malan Syndrome: Presley's Inspiring Story and How mejo Can Help Your Family

Written by: mejo

At mejo, we have the privilege of connecting with extraordinary families navigating complex rare diseases. Today, we’re honored to share the inspiring story of Presley—a vibrant 12-year-old with a big personality, an even bigger love for Taylor Swift, and endless affection for her beloved baby dolls. Presley also lives with Malan Syndrome, a rare genetic neurodevelopmental disorder impacting multiple systems throughout her body, including global developmental delays, intellectual disabilities, low muscle tone, vision impairment, and ongoing complex medical challenges.

Presley’s journey to diagnosis was long and arduous. It took over eight years of uncertainty, countless specialist visits, and relentless advocacy by her parents before Presley finally received her diagnosis of Malan Syndrome. During these challenging years, Presley’s family experienced profound isolation and frustration, searching tirelessly for answers and support.

“We spent over eight years feeling completely alone. Discovering the Malan Syndrome Foundation and connecting with a community who truly understands has been life changing.” — Sky Collins, Presley’s Mom

The Realities of Life with Malan Syndrome

Caring for a child with Malan Syndrome is an incredible journey filled with powerful moments of joy, resilience, and advocacy—but it also comes with significant challenges. Families like Presley’s face relentless unpredictability, navigating everything from unexpected medical emergencies to behavioral challenges and ongoing battles with insurance and educational systems.

“One of the hardest parts of parenting a child with Malan Syndrome is the unpredictability—each day filled with unknowns. The uncertainty adds a layer of stress most people never see but is a constant reality for rare disease families.”

For Presley’s parents, this unpredictability means there’s rarely downtime or a break from caregiving responsibilities. Presley’s condition requires continuous vigilance, ongoing treatments, frequent therapy sessions, and constant advocacy to ensure she receives the best possible support and care.

Yet, despite the many hurdles, Presley continues to inspire everyone around her. Her courage shines brightly through each new achievement, whether it's confidently mounting a horse during therapy or joyfully participating in a dodgeball game at school.

“Every day, Presley faces anxiety and challenges related to Malan Syndrome, and her bravery never ceases to amaze me. Seeing her confidence grow step by step is one of the greatest joys of being her mom.”

Daily life: Balancing Caregiving, Advocacy, and Family

Life for Presley’s family is a careful balance of meticulous planning, flexibility, and unwavering patience. Mornings start early, often involving careful preparations for medications, coordination with school teams, and managing any immediate medical concerns. Throughout the day, Presley’s parents juggle their professional lives with advocacy efforts, medical appointments, insurance calls, and managing the constant flow of necessary paperwork.

“Managing daily routines, treatments, and care often feels like a full-time job, but it's driven by determination to ensure Presley gets the best possible support.”

Despite these demanding schedules, the family finds tremendous joy and gratitude in small victories and meaningful moments shared together.

How mejo makes a difference

At mejo, we understand the complexities families like Presley’s face daily. Our app was created precisely to ease the overwhelming aspects of caregiving, empowering families with practical tools designed specifically for rare disease management. Presley’s family found mejo to be transformative in organizing and streamlining their daily routines and medical care.

mejo centralizes essential information—medications, specialist contacts, and educational documents like Individual Education Plans (IEPs)—making everything easily accessible. This reduces stress and saves invaluable time, allowing families to spend more moments enjoying life together rather than managing paperwork and logistics.

“The journal keeps all of Presley’s important information in one place, making it easy to stay organized - which is VITAL for us. What I love most is the ability to share specific parts of the journal, especially the medication list, which we frequently need.”

Our premium features, including trackers and document storage, allow families to closely monitor symptoms and securely store crucial medical records. Presley’s parents rely on these tools to proactively address health changes, improving Presley’s quality of life and providing clarity in complex medical situations.

“Anything that makes our caregiving journey less overwhelming makes a profound difference. mejo is one of those things. It keeps our family organized and empowered.”

One recent experience highlighted just how impactful mejo can be. Presley’s family often applies for grants essential to their caregiving journey. During one lengthy application, they realized all critical information was already neatly organized in mejo. This streamlined the entire application process significantly, making what was previously stressful much simpler and faster.

“During a lengthy grant application process, I realized mejo had all the critical information I needed at my fingertips—saving time, reducing stress, and making everything smoother.”

mejo’s Share feature is another powerful resource, enabling secure and selective sharing of medical information with caregivers, medical professionals, and school personnel, ensuring Presley’s privacy is always maintained.

“My favorite mejo feature is being able to control exactly what information I share. It ensures Presley’s privacy while giving caregivers and professionals exactly what they need.”

Join the mejo community and simplify your caregiving journey

mejo is committed to supporting the Malan Syndrome community. Thanks to our partnership with the Malan Syndrome Foundation, families now have access to mejo’s premium features through a special access code, providing immediate access to our powerful caregiving tools.

We invite you to join our growing community of families like Presley’s who have discovered firsthand the difference mejo can make. Sign up using your Malan Syndrome Foundation access code today, and take the first step toward greater support, organization, and peace of mind.

You’re never alone on this journey. With mejo, you’ll always be prepared for whatever comes next.

Want to provide Access codes to your community? Email contact@mymejo.com to learn more.