Resources for Children about Genetic Diagnoses
Ages 3 - 17 Years
Approximately 1/3 of people with CHDs have a genetic finding or genetic diagnosis. Parents often wonder how to explain genetic diagnoses with their children and the children's siblings. These resources can help children to understand their diagnosis, and to feel proud of their unique self.
In this section
Some of these resources are explicitly about genetics and genetic diagnoses. Other resources feature a person with a genetic condition, but the genetic condition is not the point of the story. Families should select the resources that feel right to them, and that help their children feel validated, seen, and understood.
Clearly, there are many more resources available for some diagnoses than others. We encourage authors and creators to consider producing more content featuring children with genetic diagnoses. If you know of a resource that we missed, please let us know! Email CNPschedulingandquestions@cardio.chboston.org
The links and titles on this page are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites and in these resources.
General resources
These books and links connect to resources that explain genetics and/or genetic conditions broadly, but are not about a particular diagnosis.
All Bodies are Wonderful, by Beth Cox
Chromosome Kids Like Me, by Annette Fournier
Extraordinary: A Book for Kids with Rare Disorders, by Evran and Kara Ayik
Genetics for Smart Kids, by Carlos Pazos
Grow: Secrets of Our DNA, by Nicola Davies
My First Book about Genetics, by Patricia Wynne
Rare from A to Z, by Hailey Adkisson
The Secret Code Inside You, by Rajani LaRocca
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Resources for Alagille Syndrome
Children's books about Alagille Sndrome:
Tommy, by Paola Henderson
Resources for CHARGE Syndrome
Children's books about CHARGE Syndrome:
Hiya Moriah, by Victoria Nelson
Why I Am Me, by Carry Ward and Marie Patterson
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Resources for Down Syndrome
Children's books about Down Syndrome:
47 Strings: Tessa's Special Code, by Becky Carey
The Abilities in Me: Down Syndrome, by Gemma Keir
Avenging the Owl, by Melissa Hart
Best Buddies, by Lynn Plourde
Daisy Woodworm Changes the World, by Melissa Hart
Dee-Dee Does it Anyway, by Vona Shodja
Down Syndrome, by Michelle Levine
Eli, Included, by Michelle Sullivan
Good Morning Sunshine, by Lorna Schultz Nicholson
Hannah's Down Syndrome Superpowers, by Lora Yarborough
I Am a Masterpiece!, by Mia Armstrong
My Friend Isabelle, by Eliza Woloson
My Life with Down Syndrome, by Mari Schuh
Out Into the Big Wide Lake, by Paul Harbridge
The Prince Who Was Just Himself, by Silke Shnee
Rosie Loves Jack, by Mel Darbon
Sam's Top-Secret Journal, by Sean Adelman.
A Storm of Strawberries, by Jo Cotterill
Unbound: The Life and Art of Judith Scott, by Joyce Scott
You Are Enough, by Margaret O'Hair
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Resources for Kabuki Syndrome
Children's books about Kabuki Syndrome:
I Am Lucy, by Chuck Neighbors
Where is Lucy?, by Chuck Neighbors
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Resources for Noonan Syndrome
These children's books can help children understand Noonan Syndrome:
Anna's Big Week, by Rene Pierpont
Ellie Lou Knows What to Do!, by Katie Barnett
Lila Lu and the Things I Love to Do, by Millie Santilli
Maggie Explains in All, by Angelia Shaeffer
Ollie's Eating, by Chivaun Oldes
Resources for Turner Syndrome
Children and teen books about Turner Syndrome:
Tina Talks Turner's: A Girls Guide to Living with Turner Syndrome, by the Turner Syndrome Foundation
Today I Became a Turner Syndrome Butterfly!, by Amy Tihlarik
This is Me!: My Journey with Turner Syndrome, by Kelsey Smith
What Stars are Made Of, by Sarah Allen
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Resources for Trisomy 13 and 18
Children's books about Trisomy 13 and 18:
Julia's Just Like Me, by Tamara Dever
This is Trisomy 18, by Abel Isaac
Triple the Charm, by Abel Isaac
Resources for 22q11 Deletion Syndrome
These children's books can help children understand 22q11 Deletion Syndrome (also called DiGeorge Syndrome or Velocardiofacial Syndrome/VCFS):
The Abilities in Me: 22q Deletion, by Gemma Keir
The Chronicles of Blue: You, Me, and 22Q, by Twana Wilson
Just Jen: Living with Invisible Differences, by R.S. Hibbard
22Q at the Zoo, by Manda Jenkins
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Resources for Williams Syndrome
These books can help children to understand Williams Syndrome:
Ben's Big Decision, by Jacquelyn Warren
Elise with the Great Smile, by Kristen Cagadas
Life with Williams Syndrome, by Amy Miller
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