Although Rare Disease Day is relatively unknown, it’s worth taking time to think about, and it’s worth having our children think about it, too.
The observance, held on the last day of February (this year on Leap Day), is intended to bring widespread recognition of rare diseases and to challenge us into action to overcome them. I know how important this day is from the experience of having a loved one with a rare disease. Knowledge is power.
‘Rare Is Everywhere’
Author Deborah Katz begins the book by asking what rare means: Rare is to be different in a special way. She then shows a rare animal alongside its everyday counterpart. (Did you know there are pink grasshoppers?) Included are rhymes about each animal that explain the difference between that special species and the “normal” one.
The text is a wonderful addition to anyone’s collection, but it’s the visual experience that will really move children, and the glossary gives more scientific facts about the animals.
‘Rare Is Everywhere’ Deborah Katz Miss Bird Books 32 pages
‘Meet Maya Cat: A Story About Acceptance’
This is the purrfect book to help children understand differences. Maya, a real cat, has abnormally set eyes and so looks different from other cats. Fortunately, Maya was rescued by the Odd Cat Sanctuary in Salem, Massachusetts, which aims to help kittens and cats with challenges. They found her a permanent home with Lauren Beader and Harrison Makofsky.
Basically, the book shows what a joy Maya is, and teaches love and acceptance while supporting animal rescues.
‘Meet Maya Cat: A Story About Acceptance’ Lauren Beader (story) and Harrison Makofsky (illustration) CreateSpace Independent Publishing Platform 30 pages
‘A Different Kind of Dragon’
The book introduces a nonexistent genetic disorder in a fictional species—dragons. Drax, a dragon, cannot breathe fire and thinks he is not worthy of being a dragon. Ridiculed badly, he feels that he needs to find a new home. As he flies away, he hears a distress call from a fellow dragon and finds Daphne in a cave, surrounded by a force field, imprisoned by the Stone Giants. A dragon’s fire is useless in this situation.
‘A Different Kind of Dragon’ Derek Nelson Kindness Crowd 32 pages
‘Just Like Me! A Book About a Girl With a Rare Disease’
The little girl in this book was inspired by the daughter of author Anne Rugari. Gina was diagnosed with Krabbe disease, a type of leukodystrophy, just weeks after she was born. Outside of having to visit the doctor more often, her life is typical for a child.
Gina loves to be on stage and does not shy away from her disease. And although she is in a wheelchair, she is very popular, doing most of the things that other children do.
At the end of the book, Gina is shown as a teenager attending her prom. She is spinning all around the room and holding hands with her friends. The lovely illustrations help the reader really feel Gina’s happiness.
‘Just Like Me! A Book About a Girl With a Rare Disease’ Anne Rugari Braughler Books, LLC 22 pages
‘Different Is Awesome’
Children often have the attitude that if you are disabled, you can’t live a good life. Author Ryan Haack does a great job showing that this is not true.
A little boy brings his older brother, born with one hand, for show-and-tell. The older brother, Ryan, tells the class all the things that he can do. Ryan also says that sometimes he has a hard time figuring out how to do things, but he keeps trying different ways until he succeeds.
This book is positive. The young boy is proud of his older brother, without any feelings of embarrassment because his sibling is different. It features the older boy setting a good example for those in class by showing the advantage of thinking outside the box. He can do whatever he wants to do, just in a different way.
The lesson: Life throws everyone curveballs, but the more resilient you are when standard answers don’t apply, the more successful you will be in life.
The book ends with the younger boy realizing that everyone in his class is different. The labels of tallest kid, curly blond hair, red hair, birthmark, and so on, are in boldface to emphasize that we are all unique.
‘Different Is Awesome’ Ryan Haack Mascot Books, LLC 38 pages
‘We'll Paint the Octopus Red’
Six-year-old Emma is reluctant to share her parents with the new sibling who is about to be born. Yet her anticipation grows as she makes a list of all the things they could do together. Emma is ready to be a great big sister.
However, when the baby is born, Emma’s dad tells her that the baby is a boy with Down syndrome. Dad’s eyes are red. Emma asks what the baby’s limitations will be, and her dad says that the baby will be able to do everything, but he will be on a different timeline. They will need to be patient.
Then Emma and her dad visit Mom holding the baby. Stephanie Stuve-Bodeen’s book ends with Emma telling her brother how she will help him paint an octopus red. I dare readers to read this book for the first time without tears in their eyes.
‘We'll Paint the Octopus Red’ Stephanie Stuve-Bodeen Woodbine House 25 pages
For more information on rare diseases, visit The National Organization for Rare Disorders (NORD) for its extensive database of resources and organizations that deal with rare diseases.