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How Elijah inspired Hero Kids in the Making - an SDS Story from the US

Our SDS Story and what lead to Hero Kids in the Making 



Wg Williams, Elijah's dad, shares their story.

"At only 15 months old, my son started undergoing lots of medical testing and treatments associated with his Shwachman-Diamond syndrome (SDS). He was only about 28 months old when his medical treatment-related anxiety started to become concerning. This became a separate new issue of his negative well-being. His anxiety would start to trigger in the parking lot of the doctor's office and only heightened from there. When he heard his named called in the waiting room he would start to cry in fear.


At the time I was looking in the marketplace for the ideal childhood product that would inform, distract and reward my son in his participation in these procedures. I was looking for something in which the sugar-coat wasn’t so thick, and the distraction did not suggest that pain wouldn’t exist. I found no such children's product.


I knew from having 11 nieces and nephews that regardless of what adults told children, they created fictitious monsters for their fears and imagery heroes overcome them. I wanted my son to see himself as a brave hero overcoming his reasonable fears associated with the pain and uncharted aspects of his medical tests and treatments. I then started to think that I could create such a tool myself. Being a big sci-fi fan and amateur writer, I remembered a quote I had learned; “Any sufficiently advanced technology is indistinguishable from magic”. This was from Arthur C. Clarke's “Profiles of the Future: An Inquiry into the Limits of the Possible”, a non-fiction book.

I wanted my son to see himself as a brave hero overcoming his reasonable fears associated with the pain and uncharted aspects of his medical tests and treatments. I then started to think that I could create such a tool myself.

I was thinking of a story that would be on a kid’s level of understanding and within their childhood interests. This would be a fun fantasy tale to grasp a child's imagination but also inspire bravery. I wanted an origin type story with cute magical animals that kids would adore. I wanted to include how these kids, who are actual heroes, could become their own hero kid in the making. I wanted a story easily understood by very young kids but still interesting and exciting to kids 10 years old. Children like him will always be heroes and modern medicine is truly magical. This story although fantasy, would also have to be an accurate kid’s self-help instruction manual for these medical procedures. The end result was this children’s picture book, Hero Kids in the Making!"



About Wg Williams' children's picture book:

Finally, a tool that prepares children for medical procedures in a fun way! This colorful storybook was especially created to help reduce childhood fears in their inevitable encounter with medical devices. "Hero Kids in the Making" is a children's picture book that redirects the imagination of a pediatric patient from a fearful perspective and towards a hero making tale that inspires bravery.


This fun rhyming story turns medical procedures into cute, magical creatures. Instruments such as stethoscopes, syringes and imaging equipment are transformed into these magical animals, now in disguise. It's a fantasy hero making version of what the child will really experience during a doctor's or hospital visit. When a child familiar with this fantasy tale experiences medical procedures, they instantly become a hero character of the story themselves.



The Coloring Book collaboration:

When the SDS Alliance heard bout the book, the team fell in love with the story immediately. We started to think about how we could make it more accessible (easy to download and print) and more interactive for the kids. This is how the coloring book idea came to be. And luckily for the community, a 9-your-old child with SDS volunteered to create illustrations. The Hero Kids in the Making COLORING BOOK is now available on our kids' corner page. Check it out, today.


To request printed copies and/or stickers, email us at connect@SDSAlliance.org


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