Author’s new children’s book tells tale of boy whose sister has SMA

Story based on real life seeks to increase SMA awareness

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by Mary Chapman |

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A group of children, including one child in a wheelchair, hold hands while standing in a row.

A new children’s book — one whose story is inspired by the author’s own family — seeks to heighten awareness of spinal muscular atrophy (SMA) while helping young readers appreciate and understand differences in others.

Written by Alvarys Santana, the 34-page book, titled “My Sister is Special,” teaches about disability through the eyes of a young boy, Ken Jr., whose sister, Kalei, has SMA.

The colorfully illustrated tale, which promotes empathy and inclusivity, follows Ken as he teaches a friend about his sister’s rare genetic condition, which is characterized by progressive muscle weakness and atrophy. The book shows that Kalei is a happy child, despite her disorder, and is, in her own way, remarkable.

It was inspired by Santana’s stepdaughter and son, for whom the primary characters are named. “Hey Ken, your sister is different than you and me. When she grows up, can you explain what she will be?” a book character asks on one page.

“I wanted to write this book to help other children understand SMA,” Santana said in a press release. “I wanted to show them that Kalei is special, even though she has a disability. I hope that this book will help to raise awareness of SMA and to show other children that they are not alone.”

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SMA primarily affects motor function, but frequently causes problems with swallowing, speaking, and breathing, in addition to other symptoms. It can pose a myriad of challenges in day-to-day life, depending on the SMA type.

The disorder is estimated to affect about 1 in every 8,000 to 10,000 live births, and approximately 1 in every 50 individuals is thought to be an SMA carrier. Carriers are usually healthy individuals who possess an SMA-causing mutation and can transmit it to any biological offspring.

The book is dedicated to all children with SMA, and to Kalei, “who was given a max of 2 years of life and is blessed to be 13 years old,” Santana states on the book’s dedication page.

Throughout August, a portion of sales proceeds will be donated to the Spinal Muscular Atrophy Foundation, which works to speed the development of new treatments for SMA.

An author of multiple children’s books, Santana’s works are centered around diversity, inclusion, and representation.

The book is published by ASC Books, which specializes in children’s books with these themes.