“Loie’s Disease” Children’s Book Provides Resource for Leukodystrophy Families

This summer, Children’s Hospital of Philadelphia social worker Sarah Stoney and Calliope Joy Foundation co-founder Maria Kefalas were discussing how difficult it was for families to explain leukodystrophy to children. A year earlier, a school teacher emailed Kefalas to ask if there were any resources to talk about leukodystrophy for the classmates of a recently diagnosed child. “It was embarrassing to say we did not even have a brochure.” So Kefalas and Stoney decided to do something about it. They would create a children’s book.

Writing the text was easy. Maria Kefalas, a professor and author of numerous books, had spent years trying to explain leukodystrophy to her own children, family members, journalists, friends, and colleagues.  Kefalas recalls: “The 300 words poured out of me. It was like this story I had told so many times before.” With the outline of the book created, Kefalas consulted with Stoney, art therapist Jennifer Lemisch, and neurologist Amy Waldman.  “It was important to get the science right, not overwhelm children, but also offer people some hope and a way forward,” Kefalas remembers.

Kefalas then reached out to Perky Edgerton an award-winning artist, illustrator, and faculty member at the University of Pennsylvania who teaches a course on children’s book illustration.  Edgerton was tempted by the project, but was in the midst of a new show. She recommended another artist, Edgerton’s 22-year-old daughter, Lela Meunier, who is finishing her BFA at the Tyler School of Art. 

Edgerton explains, “Lela just understood this rather unique but challenging project from the start.”

Kefalas too was impressed by Meunier  “That first meeting with Lela was amazing. I thought I would have to do all the heavy-lifting, but she had the most thoughtful ideas about how to illustrate the disease in a way that was clear, scientifically rigorous and achingly beautiful.” Over the course of the summer, Meunier requested video footage and photographs of Callie to create the images.  Meunier sought advice from family friend and acclaimed children’s author and illustrator Judith Schachner.

By September, the final project went to Artbookbindery.com, a self-publishing firm in Canada that specializes in children’s books.

When Kefalas and Meunier wanted to title the book, Meunier assumed the book was about Cal. It was true Cal had inspired the images, but Kefalas did not think this was about her family. “From the start, I wanted this to be a story that was for the leukodystrophy community.” And it was in looking at Meunier’s illustrations that Kefalas realized that the little girl and boy featured on the front pages looked more like Loie Hammond and her brother Owen.  Loie Hammond is the daughter of Lauren and Matt Hammond, one of the first families Kefalas came to know after Cal was diagnosed. Kefalas explains,  “Something about Lela’s illustrations reminded me of a drawing Loie’s brother Owen had created of his sister Loie not long after her death.”  

Kefalas worried the Hammonds might be uncomfortable about lending Loie’s name to the project. But the Hammonds read the book and agreed that it would fill a huge need. They were honored to have Loie be the girl featured in the title.   Matt and Lauren had struggled to explain leukodystrophy to Loie’s then 5 year old brother, so, they too understood how much the book could be a resource to families.  Since Loie’s death from late-infantle onset MLD at the age of 3 in 2014, the Hammonds have become passionate advocates for the leukodystrophy community. 

In its 200 book run, the response to the book has been overwhelmingly positive.  Becky and Jason Guy purchased 20 books for the Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia and copies of the book have been shipped to New Jersey, New York, Massachusetts, Idaho, Ohio, Georgia, Florida, California, England, and even Australia.  ELA Deutchland hopes to provide a German translation for its 200 member families and work is underway on French and Spanish translations. Global Genes is considering a grant application to fund the project and expand it. 

For Meunier, the experience has been life-changing. Her senior thesis project at Tyler will be a collection of illustrated children’s books based on her own stories.  She knows illustrating more children’s books will be in her future. 

Kefalas believes this project is making an impact more than anything the foundation has done. “I have written books before, but I could never have of imagined an 11 page book would mean so much to families. One mother wrote to say she was going to share the book  with a younger sibling who had never met the baby the family lost to leukodystrophy. The Executive Director of the Child Neurology Foundation (the North American association of pediatric neurologists) thinks the book could be a model for other disease states and maybe even instruct neurologists on how to speak to patients.   Just yesterday, I sent a note to Matt and Lauren [Hammond] telling them Loie was going all over the world to help families. It’s been a remarkable effort.”

You can order the book on line at The Calliope Joy Foundation website.


Source: http://www.thecalliopejoyfoundation.org.