Zac’s Play Day: introducing a new children’s book about living with SMA
Children’s books always used to break my heart. When I would read books to my eldest, Florence, I found myself omitting parts of the story, like “when you grow up you’ll run and jump and get taller…” or if the story was about a ballerina I’d cringe. I think it probably hurt me more than Flo, but I wanted to protect her from what she couldn’t vocalize or experience because of her disease (SMA). Finding books that she could relate to were impossible.
But there’s finally a book about living with Spinal Muscular Atrophy (SMA)! I received this beautiful book written by Dr. Crystal Proud and Dr. Robert Graham and presented by Biogen.
It’s a great book for children living with SMA, but also an aid to help discuss and explain diseases and disabilities to children.
The book is about a Zebra named Zac with a feeding tube, a BiPap machine, a standing frame and a wheelchair. I found it so heartwarming and validating. It normalized what living with a disability or disease looks like. For my trach mama’s, it also showcased a little panda with a tracheotomy.
Teddy asks for this book almost every day, and has made the connection that sometimes people in wheelchairs have SMA (obviously it gets tricky explaining that not everyone in a wheelchair has SMA, but it’s a start for a 4 year old). I know that it’s teaching him and for that I’m grateful.
Spinal muscular atrophy (SMA) is a rare genetic disease that affects the nerves that control muscle, impacting the motor function of tens of thousands of people globally. Some people with SMA are unable to sit, while others have difficulty walking. Some people have issues breathing, eating, and performing other daily functions. SMA can impact infants, children, teenagers, and adults—and each may experience the severity of the disease in different ways. SMA does not affect an individual’s ability to learn. Zac’s Play Day represents an experience related to a child living with SMA, and it is not meant to represent the experience of everyone living with SMA. The purpose of this story is to aid in the education and awareness of SMA—to help explain the reality of life with the disease, including both the limitations and possibilities individuals may experience.