Children's Books Genetic Conditions

Talking to Children

Over six years ago, a mother made a wish when talking to Dawn Laney, MS/CGC, a genetic counselor, research coordinator, and instructor in the Department of Human Genetics, to have a children’s book that would help her explain the complex genetic condition in their family to her son. Laney responded, “Well I could write that book” and the rest is history. Laney, an expert in genetic diseases, had already published a non-medical children’s book titled A Late Night Lullaby and was up to the challenge of writing books for children living with chronic genetic diseases.

As a genetic counselor, Laney works closely with patients affected by lysosomal storage diseases, primarily Fabry disease. After diagnosing patients, Laney has to explain the test results and potential treatment options to patients and their families.

“After having kids, for whatever reason, my brain started writing children’s books,” says Laney. She has written almost 30 yet to be published children’s books that are scattered across her house on various sticky notes.

Dawn Laney, MS/CGC
Dawn Laney, MS/CGC

In early 2013 OTT featured Dawn Laney’s three children’s books, which were written to explain complicated genetic diseases to children and their families. Since then, Laney has added three new books to her resume.

Laney’s first children’s book on genetic diseases was Joe Learns About Fabry Disease, the story of a young boy named Joe, who deals with frequent foot pain. After visiting a doctor, Joe learns that he suffers from a condition called Fabry disease. The doctor explains the disease to Joe using a simple analogy of a bathtub with a clogged drain. When the drain is clogged, the bathtub overflows. Similarly, because Joe has Fabry disease, his body gets clogged with “gunk,” which is why Joe often feels tired or experiences pain. When using the story in the clinic, Laney finds that the children often relate closely to the main character. More than once she has heard children say, “Joe has the disease I have too!”

Her second book, My Brother, MPS, and Me, co-authored with her Emory colleague Stephanie Cagle, MS, a genetic counselor, approaches the disease from a sibling’s perspective. A young boy named Greg tells us the impact that MPS has on his brother, Daniel. “I wanted to reach the siblings too because there can be developmental delays in children diagnosed with MPS. I thought it was a nice way to tell the story from the brother’s perspective,” says Laney.

Book Covers
Book Covers

There is an additional book on Fabry Disease whose main character is a young girl, Dani Goes to Fabry Family Camp. Laney wrote this book to feature issues faced by young girls with Fabry Disease.

In her book Super Pompe Powers, co-written with genetic counselors Jennifer Propst, MS, and Eleanor Botha, MS/CGC, both genetic counselors, presents an alternate way of thinking about super powers in children with Pompe Disease. As her main character says, “You can never tell just by looking at someone who they are – I am a Superhero – my powers are bravery, patience, and hope.”

Laney says that response to the books has been extremely positive. Both are well known within their communities and available through Amazon. In fact, The National Fabry Disease Foundation includes Joe Learns About Fabry Disease in their informational packets.

Transitions: Managing Your Own Healthcare: What Every Teen with an LSD Needs to Know, is a book written for young adults with genetic diseases who are assuming control of their own healthcare. The book is written specifically for teens with lysosomal storage diseases, [LSD], a group of fifty progressive, life-long diseases which all involve the deficiency of integral enzymes. The book help teens understand their medical need, assess how much they know right now, explain available resources to its young adult audience and list the steps to taking charge of their own medical care.

The newest addition to Laney’s library is a Scooby-Doo inspired chapter book entitled The Mystery of the Smashed Statue (A Fabry Teen Camp Adventure Book 1). This novel is the first in a series of teen-targeted books about Fabry disease and adventures taken by characters living with Fabry disease. Unlike her other books on this disease, The Mystery of the Smashed Statue is longer and written to amuse readers with characters that they can relate to rather than simply explain their disease to them.

Laney has many other projects in progress and is hoping to have two new books out on the market in the near future. One is a collaborative project with Elizabeth Smith, MS on hypophatasia and the other is a non-medical children’s book about a moose co-written with a friend from college. Her current and future publications are guaranteed to fill holes in the literary market for children and teens who benefit from books that help them comprehend the complicated genetic diseases with which they live.

All revenues go to the Emory Lysosomal Storage Disease Center.

These books can be found on Amazon.

Techids: 09112, 11173, 12207, 15195, 15196, 15203