Celebrating Rare Disease Month: Bet You’ve Never Heard of CHARGE Syndrome!

Most people haven’t heard of CHARGE Syndrome (including doctors who say, "This is my first patient with CHARGE")— and that’s part of the challenge.

CHARGE syndrome is a rare genetic condition, affecting roughly 1 in 10,000 births. It’s complex, lifelong, and looks different for every person who has it. The name CHARGE comes from a pattern of medical features that can include differences in the heart, hearing, vision, breathing, growth, balance, and development.

Because CHARGE is so rare, finding knowledgeable medical support can be incredibly hard — especially for families living in rural or remote areas. Many parents spend years educating doctors, coordinating dozens of specialists, and traveling long distances just to access basic care. Finding trained caregivers, therapists, or educators who truly understand CHARGE can feel nearly impossible.

And CHARGE doesn’t end with childhood.

Across a lifetime, individuals with CHARGE may face:

• Multiple surgeries and ongoing medical care

• Deafblindness or combined sensory loss

• Feeding and breathing challenges

• Delays in communication, mobility, and learning

• Mental health challenges, especially during adolescence and adulthood

• Barriers to independence, employment, and community inclusion

The impact reaches the entire family.

Parents often become full-time advocates, care coordinators, and medical experts — while navigating exhaustion, financial strain, and isolation. Siblings may grow up with deep empathy and resilience, but also with less attention, added responsibility, and the emotional weight of uncertainty about the future.

Yet within the CHARGE community, there is also strength, creativity, and fierce love. Families build networks where none exist. Individuals with CHARGE continually redefine what communication, success, and independence can look like.

This Rare Disease Month, we’re sharing stories like CHARGE to remind the world:
Rare doesn’t mean invisible — and it certainly doesn’t mean alone.

💜 Meet Shenan (CB) Leaver, a 46-year-old CHARGE Syndrome author and member of the MSI Press family. Shenan's book, Mommy Poisoned Our House Guest, is fun to read and has been translated into Russian where it is enjoyed by people who live in Russia -- life's humorous moments cross continents.

Book Description

Mommy Poisoned Our House Guest is a collection of anecdotes about a "detail-oblivious" homemaker and traveler, told from the point of view of her mentally challenged son. The simplicity of language has made this book a favorite with ESL students, and the humorous "conclusions" about life from a developmentally disabled child's point of view endears it to anyone with a sense of humor. Written in collaboration to demonstrate the purpose and power of the written word as a way of connecting with other people and bringing them some mirth.

Book Review

Mark D. Witzel/Amazon

5.0 out of 5 stars Brilliant!

Reviewed in the United States on January 30, 2008

CB and his Mommy, internationally acclaimed language scholar Betty Lou Leaver, wrote this book as part of a project to help CB understand the value of the written word. It's a great read not only because of the love that went into it, but also because the stories are pretty darned funny!

CONTACT editor@msipress.com FOR A REVIEW COPY

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