top of page


Our Unexpected Hospital Visit While On Vacation
As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...

Ryan Sheedy
Jul 11, 20243 min read


Tethered Spinal Cord Syndrome and Surgery: What Parents Need to Know
A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...

Rare Parenting
Jun 25, 20243 min read


Navigating Rare Disease Challenges: How My Rett Ally Became a Mom's Secret Asset
In the wild ride of parenthood, nothing quite prepares you for the unexpected
twists and turns that life throws your way.

mejo
Jun 24, 20245 min read


Navigating the Complexities of Costello Syndrome
Today, we bring you the heartfelt testament of Amber, a devoted mother and caregiver, whose journey with her daughter Ryiah...

mejo
Jun 17, 20244 min read


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...

mejo
Jun 11, 20244 min read


Camp “Peace of Mind”: Laura and Sam, the Dynamic Duo
In the complexities of caregiving every day presents a unique set of challenges and triumphs.

mejo
May 27, 20243 min read


Best in Class Caregiving with mejo App Founder Ryan Sheedy
Confessions of a Rare Disease Mom - the Podcast.

Podcasts
May 23, 20241 min read


My Rett Ally: Revolutionizing Care Management for Rett Families
On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list...

International Rett Syndrome Foundation
May 16, 20244 min read


A Mother and Daughter's Rare Journey: Navigating the Diagnosis Sea
In the vast expanse of the medical world, a journey towards diagnosis can often feel like navigating the open seas without a compass...

mejo
May 16, 20242 min read
_edited.png)
Turning advocacy into power for patients and families.
Advocacy is a word we hear often in healthcare. But for many families, advocacy isn’t a choice, it’s survival. For me, it started the day my son Reynolds was born.
From the delivery room to the NICU to countless appointments and hospital stays, advocacy has been woven into every step of our journey.

Ryan Sheedy
18 hours ago3 min read


Featured blog
Blog
Real stories from real patients, caregivers and experts.
bottom of page