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Locally-Made Picture Book to Shed Light On Rare Disease
a Kickstarter-exclusive coloring book funds creation of family-friendly book about Ehlers-Danlos Syndrome
For many, looking back at your childhood means memories filled with swing sets, stuffed animals and toys, knee or elbow scrapes from too much fun outside, and learning the ropes of life. For Pey Carter, the ropes of life have been a different task due to a chronic illness, and she wants the next generations to grow up in a world different than what she experienced.
Pey has Ehlers-Danlos Syndrome (EDS), a rare, chronic genetic disorder that affects the body’s tissues, which support the skin, bones, and other organs that keep our bodies stable and flexible. EDS has 13 subtypes, and Pey, a local advocate and author, has the hypermobility subtype of it. This means she has overly flexible joints and fragile skin, meaning joint pain and dislocations are common and damaged skin doesn’t heal well.
Often referred to as an “invisible” disease, Pey describes this type of EDS as a rubber band. “Think of the connective tissues in your body like a rubber band; it helps your skin stretch and bounces back when you move or play. But for people with EDS, their rubber band is a bit too stretchy and doesn’t have the strength to hold everything together correctly,” she described. “Living with Ehlers-Danlos Syndrome can be challenging as it can impact various aspects of daily life.”
Pey’s daughter, Abigail, also has the hypermobility subtype of EDS.
Pey says she has struggled with ableism and discriminatory comments her whole life, and she wants a different experience for future generations, like Abigail’s. Thus, the idea for Unbreakable Bonds: A Story of Friendship and Ehlers-Danlos picture book was sparked.
The book follows Abigail, a young girl – based on Pey’s daughter, Abigail – diagnosed with EDS, but because others can’t see she has medical issues, it is hard for them to understand why she needs special accommodations at school, Abigail’s friendships grow stronger over time.
Unbreakable Bonds will feature Abigail, her best friend Mira, her mom, and Dazzle on the zebra. “Zebras are often used as a mascot for Ehlers-Danlos syndrome (EDS) because of the phrase, ‘When you hear hooves, think horses, not zebras.’ This phrase is a reminder for medical professionals to consider unusual and rare diagnoses, like EDS, when evaluating patients,” Pey explains.
To fund the creation of the picture book, Pey created a Kickstarter in February describing the book idea, offering a Kickstarter-exclusive coloring book called Dazzle On in return for financial contributions. The coloring book features puns and humor, colorable designs featuring sayings like “Chronically awesome,” “They see me rollin’,” and “My joints go out more than I do”.
The original Kickstarter goal was $300, and that was met within one week. Additional “stretch goals” of $400, $500, $600, $1,000 – which would fund an early release PDF of Unbreakable Bonds – $1,500, and $2,200 were added due to the massive support received.
By the end of the 35-day campaign on March 10, more than $2,600 was raised – more than 700% of the original $300 goal.
Kickstarter supporters – nearly 90 individuals funding the campaign – will receive incentives like sticker sheets and ‘thank you’ cards, packs of pencils or markers, prints, and of course, the paperback Dazzle On book, depending on their contribution.
Kickstarter gifts are estimated to be delivered sometime in April, while Unbreakable Bonds now has the funding to be produced.
“Abigail wanted to share her experiences to help other kids understand invisible chronic illnesses,” Pey says on the Kickstarter fundraiser page.
“… I can’t overstate the importance of literature that helps to shape a more accepting world for our kids. I want the next generation to grow up unafraid, undeterred, and utterly confident in their right to be loved and belong.”
You can learn more about Pey Carter and her work on her website.
