Woman Creates Picture Book to Support Daughter with Moebius Syndrome

 

In the past, Katie Lockwood has worked in a variety of different roles within counseling and education; she even worked as a disability advocate, championing inclusion on a larger scale. So when her daughter Rose was born and was soon diagnosed with a rare neurological condition called Moebius syndrome, Lockwood knew what she wanted to do.

Writing a Book: The Process 

Inspired by her commitment to inclusion and her desire to raise her daughter in a world that celebrates differences, Lockwood decided to write a children’s book. According to Cape News, this book was designed to teach children about diversity and normalize disability as a part of daily life. 

In 2022, when Rose was two years old, Lockwood ran a Kickstarter campaign to raise funds for her book, entitled: “Why Me, Mama?” The book features a young owl named Rose who is planning her birthday party. Due to her physical differences, like the inability to adduct the eyes, Rose the owl is worried that her friends won’t want to come to her birthday. But as Rose and her mother visit her friends to invite them, Rose realizes how everybody has differences. 

Through the Kickstarter campaign, Lockwood invited other parents to submit their children’s names and differences for inclusion within the book. As a result, characters have autism, strabismus, hypotonia (low muscle tone), limb differences, developmental delays, tracheostomy tubes, vision difficulties, and more. 

Ultimately, Lockwood hopes that her book serves to connect children across boundaries and to realize that they aren’t alone. “Why Me, Mama?” has won a bronze Moonbeam Children’s Book Award. Currently, Lockwood is working on raising awareness more broadly. If you have any information on how to include this book in your local library or other similar arenas, please contact Katie Lockwood at [email protected]

About Moebius Syndrome

As briefly described above, Moebius syndrome is a rare congenital neurological disorder caused by absent or underdeveloped cranial nerves. In many cases, the 6th and 7th cranial nerves are affected, though the 3rd, 4th, 5th, 9th, 10th, and 12th have also been implicated. These facial nerves normally control eye movement and facial expression. Therefore, people with Moebius syndrome are often unable to move their eyes back and forth, and are unable to smile, frown, pucker their lips, or raise their eyebrows. 

Doctors are unclear of the exact cause of Moebius syndrome. While some cases occur in families, most occur sporadically. Some hypothesize that there is a genetic predisposition, while others believe that the condition results from diminished or interrupted blood flow to the fetus during pregnancy. 

Symptoms and characteristics can, but do not always, include:

  • Poor sucking (in infancy) and other feeding difficulties 
  • Cleft palate
  • Strabismus (crossed eyes) 
  • Developmental delays
  • Facial paralysis
  • Small chin and mouth
  • Hypotonia
  • Autism spectrum disorders
  • A short, malformed tongue
  • Excessive drooling
  • Underdeveloped pectoral muscles and/or limb defects 
  • Sensory integration dysfunction

This is not an exhaustive list of symptoms and characteristics. Treatment options include supportive measures such as physical therapy, speech therapy, and occupational therapy, or splints, braces, and prostheses. There are also corrective measures such as “the smile operation,” a cross-facial nerve graft, and a temporalis tendon transfer.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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