National Rare Disease Day: Some Comments and a Challenged Author
Today, February 28, 2025,* marks Rare Disease Day, an international observance dedicated to raising awareness about rare diseases and their impact on patients' lives. Among these conditions is CHARGE Syndrome, a complex genetic disorder that affects approximately 1 in 10,000 births worldwide. The acronym CHARGE stands for Coloboma, Heart defects, Atresia choanae, Restricted growth and development, Genital abnormalities, and Ear abnormalities - reflecting the multiple systems affected by this condition.
What makes this Rare Disease Day particularly noteworthy is the ongoing contribution of Shenan Leaver, believed to be the oldest living person with CHARGE Syndrome in the world. Despite facing numerous medical challenges throughout his life, Leaver has defied expectations by not only surviving but thriving as an author. His resilience exemplifies the potential for individuals with rare conditions to lead fulfilling lives when provided with proper support and opportunities.
Leaver's book, Mommy Poisoned Our House Guest, published by MSI Press, has developed a small but dedicated following, including in St. Petersburg, Russia where a professor in the psychology department of the state university quite skillfully translated it into Russian (Nash otravlennyj gost') and published it. This collection of humorous anecdotes is narrated from the perspective of Leaver, who is mentally challenged, and chronicles the misadventures of his mother, a "detail-oblivious" homemaker and traveler. The book's simple language has made it particularly popular among English as Second Language (ESL) students, while its unique viewpoint and gentle humor appeal to diverse readers.
What makes this work especially significant is how it demonstrates the power of writing as a tool for connection. Through collaboration, Leaver has created a platform that not only entertains but also provides insight into the perspective of someone with developmental disabilities, fostering understanding and empathy. The book stands as a testament to how sharing our stories can break down barriers and build bridges between different lived experiences.
It's also worth noting that during this Black History Month, Mommy Poisoned Our House Guest is being sold by a Black-owned business on Amazon, highlighting the importance of diverse representation in the publishing and bookselling industries. While Leaver himself is White, this partnership reflects the kind of inclusive collaboration that helps bring underrepresented voices and stories to wider audiences.
As we observe Rare Disease Day 2025, Shenan Leaver's story reminds us that behind every diagnosis is a unique individual with gifts to share. His humor, resilience, and creativity serve as an inspiration not only for the CHARGE Syndrome community but for anyone facing seemingly insurmountable challenges.
*I am always amused by dates of February 29 -- National Rare Disease Day being one of them, and, of course, this year having to choose between Feb 28 and March 1 for celebration -- because my uncle was born on February 29. He died at the technical age of 16 (he had had only 4 birthdays), but his death certificate read" "Age 64.") He always preferred (in humor) to use his technical age!
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Julia Aziz, signing her book, Lessons of Labor, at an event at Book People in Austin, Texas.
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