Rare Disease Report

"Rare Is Everywhere" A Terrific New Children's Book

OCTOBER 31, 2016
Ricki Lewis, PhD
We treasure genetic variation in our pets – from multi-toed cats to white rabbits to the hereditary dwarfism of corgis, basset hounds, and dachshunds. But when genetic variation affects health, especially in children, it can be challenging to avoid feelings of otherness and even isolation.
Deborah Katz decided to help children see their rare conditions as a part of nature that they share with many other types of animals. And so she wrote and illustrated a book, “Rare is Everywhere,” and is currently running a kickstarter campaign to fund the first print run. All proceeds will go to the Rare Disease Foundation, a non-profit that funds research and programs for children with rare diseases. The kickstarter campaign ends November 22.

Ms. Katz herself is rare because she has an unusual combination of talents and skills. In addition to being a professor of nursing, she’s a medical writer and editor and an artist whose work has been showcased in local galleries and featured in educational publications. Plus she has a degree in environmental science from Cornell.

Ms. Katz explains how she got the idea to write “Rare is Everywhere”:
I’ve met so many kids in the last two decades-- personally and professionally - who feel like they are the only ones that are different. Even though I would tell them “you aren't the only one, there are so many others like you, and your difference can be a strength,” I felt like just saying it didn't really have an impact.
I've always had a passion for children's literature and its power to shape and inspire, and had written numerous stories for my own children over the years that I would tell to them at bedtime. So I started thinking about writing a children's book that showed kids that differences are common.
One day, one of my children asked me what it means if something is rare. In trying to answer in a meaningful, scientific sort of way, I started to explain what a gene is and how we differ from one another in a way that my child could grasp. 
I then had a Eureka! moment-- I could write a book that explains what rare is by showcasing animals with genetic changes that distinguish them from other members of their species, and that also shows kids how common differences are when you take a birds-eye view of the entire animal kingdom.”
Not only are rare variants common, and not only do animals live just fine with unusual traits, but some actually benefit from their differences. The white spirit bear is superior at catching fish, the black penguin mother stands out to her babies, while the black jaguar fades into the backdrop of a dark forest floor. My favorite is the white alligator, which cleverly covers its pale head with branches:
I put twigs on my head and leaves by the bunch
When birds land on me, I eat them for lunch!
Ms. Katz avoids negative terms like “mutant” and “abnormal,” but doesn’t deny that being visibly different is to stand out – such as the brown panda, blue lobster, and pink grasshopper. By the end of the book, she hopes, young readers “have experienced a journey into the animal kingdom that leaves them with the knowledge that differences are common. They occur in every species, in every habitat, in every corner of the globe--in all of us. Children learn that differences are everywhere - and something to celebrate!”
Please support RARE IS EVERYWHERE by purchasing a book or making any donation. 

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