RARE Daily

Ode to Joy

June 19, 2023

Josie Johnson has an infectious laugh. It would take effort not to smile when you hear it.

The 11-year-old girl has the rare neurodevelopmental condition FOXG1 syndrome. FOXG1 can range in severity. Children with the condition can lose the ability to walk, speak, or sit up without falling over. Epilepsy is a common feature, and they are unable to take care of their basic needs. One shared feature on a long list of serious symptoms, though, is an infectious laugh. That, said Nicole Zeitzer Johnson, has helped get through difficult times.

“Because our life is so hard, it’s this gift to say, ‘We’re okay. We’re going to laugh our way through the hospital visits and what is a really trying life for parents and families.’ I always say, ‘Imagine we didn’t have that. That would be really sad,’” said Johnson, co-founder and executive director of FOXG1 Research Foundation. “I know when Josie is off because she’s not laughing and she’s not smiling and she’s not connecting. It’s this unspoken communication. She has her ways of telling us when things aren’t right. Her baseline is joy.”

The joy embodied in Josie’s laughter inspired Johnson to write the new children’s book Joyfully Josie to help parents and children become inclusive of children with disabilities. The book, published by the FOXG1 Research Foundation, is the first in what is expected to be a series of books designed to help parents and children learn about people with disabilities, develop empathy towards them, and be promote understanding from an early age. The effort includes an interactive website, and a line of shirts and other products emblazoned with the entreaty “Live Joyfully.” All proceeds go to support the FOXG1 Research Foundation.

Johnson said that she’s had many conversations with parents over the years who expressed the need for tools to help their children understand disabilities. She said that point became striking when she would see little children who seemed scared when they met Josie.

“They come over with their deer and headlight eyes. They usually have their hand up by their mouth and then they find their parents and hide. I’ve noticed this time and time again, and I said, ‘This is probably scary for them because they don’t understand it,’” she said. “’Why is this girl, who looks to be my age or older than me, different? Why is she in a wheelchair? She’s not saying anything. What is this?’ It struck me that parents can use the tools to help spark the conversation.”

In the book, Josie is in a park when a boy hears her laughing and he is drawn to her. He’s a bit nervous, but she smiles at him, and he comes over. Josie is nonverbal, but her mother takes out a “yes” and “no” button” that allows Josie to respond to the boy’s questions. Josie’s mom explains Josie’s condition to the boy. He’s so taken with Josie’s laughter that he dubs her “Joyful Josie.”

Johnson is planning additional books for the series that revolve around other children with rare diseases, their disabilities, and various aspects of their lives. This includes books that center on the genetics of diseases, epilepsies, and medical equipment.

She’s said she’s gotten a lot of positive response to the book, but the recurring comment she hears that makes her happy is when people tell here “every child should read this.”

Josie was Johnson’s test reader. She ran drafts of the book by her to gauge her reaction. Johson said Josie recognizes herself in the book and whenever she reads it to her, Josie smiles—joyfully, of course.

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