Community Member Creates Children’s Book Featuring Characters Living With CMD

CMD Community Member, Dr. Ashley Burkman, has penned a new children’s book titled “Move,” featuring an entire line-up of characters who all live with congenital muscular dystrophy (CMD). “Move” is just one of a 3-part series that Burkman, along with Dr. Sarah Ouano, co-authored. Both are naturopathic doctors and mothers to children living with rare diseases.

Burkman’s young son, Carter, lives with LAMA2-CMD and uses a power wheelchair. LAMA2-RD is the result of two genetic mutations that cause a complete or partial deficiency in the production of the laminin 211 (merosin) protein. Affected individuals often experience various characteristics, including but not limited to muscle weakness, joint contractures, facial weakness, white matter changes, and sometimes seizures. Carter is a very active boy involved in numerous sports and is a member of their local Connecticut Power Soccer league, founded and spearheaded by Burkman herself.

Ouano’s young son has been diagnosed with Fetal Alcohol Spectrum Disorder (FASD) and has experienced hearing loss as a result of substance exposure in utero.

Burkman and Ouano hope their new heartwarming book, “introduces young readers to the diverse ways we navigate the world, highlighting how adaptive equipment empowers individuals with disabilities to live full and active lives.”

"Move" celebrates inclusivity, resilience, and the joy of movement in all its forms. The authors are special needs moms who have the common goals of fostering inclusive play spaces, optimizing nutrition for every body, and supporting families of every constellation. They have also created the Every Body Plays Project, ensuring everyone has the same chances to grow and thrive to play in all ways.

The recent release of “Move” hopes to continue sparking conversations about diversity, inclusion, and the simple joy of being active. Each of their books sheds light on a variety of topics that individuals with special needs may do a bit differently than others.

The trilogy kicked off its series with “Nourish,” a book released in February 2023, about the different ways those living with disabilities may eat. Whether consuming food by utilizing hands, medical devices, or special utensils, it illustrates the diversity in how we nourish our bodies and cultivate an environment of tolerance and appreciation.

Next up in the 3-part series is “Speak,” slated to be released in Fall 2025. “Speak” hopes to tackle communication and the ways in which we connect. According to the authors, “‘Speak’ gently unfolds the fascinating world of human communication, revealing that there's more than one way to be heard. From the enchanting movements of sign language to the amazing technology that lends a voice to those who are nonverbal, this book celebrates the diverse ways we connect with one another.”

“Speak” is an inspiring journey that fosters understanding, empathy, and the joy of making connections in countless ways. The authors state, “[You’ll] discover the spectrum of communication from boards and picture cards to high-tech tools like speech-generating devices and apps, and how each empowers everyone to share their thoughts, feelings, and dreams.”

You’ll have the opportunity to meet the authors at this year’s Cure CMD 2025 SciFam Conference in August! They’ll have a table where you can chat with the writers and purchase your copy in person. You can also grab a copy of “Move” online at Amazon.