Myra Holland
Teamwork makes the dream work.
Every appointment, every meeting, every moment, “are we doing enough?”. Often there’s no definitive answer and we’re left to figure it out.
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Brady Crandall
Sep 53 min read
From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.
Ryan Sheedy
Jul 103 min read
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...
Rare Parenting
Jul 94 min read
Does Your Child Need Genetic Testing?
While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...
Rare Parenting
Jun 243 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...
mejo
Jun 235 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 174 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 114 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
May 273 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.
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Our favorites
Industry podcasts worth checking out!
Brien Gearin
Nov 43 min read
Smiles for Ceci
While Rett has changed her life and our life as a family, it hasn’t changed the wonderful little girl Ceci is and always would be with or wi
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Real stories from real caregivers and experts.
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