Book Project for Children with Genetic Diseases



  • A few months ago I took on a volunteer book illustration project (along with other students at my uni). This project is a big collaborative effort where genetic counseling students from my uni were paired with art students and tasked with creating books for children that have rare genetic diseases. We're working with a geneticist from the Boston Children's Hospital who will be in charge of getting the books printed.

    The topic that I was given for this project was the metabolic condition MCADD. For some background: people with MCADD have problems breaking down fat to use as energy. I was paired up with a genetics counseling student who is working on the text for the book, while I'm tasked with illustrating it. As of now, I have only received snippets of information from him for the book and don't have any solid text to go off of, so he instead gave me a list of potential images that we may need.

    Here's the list for reference: child sick in bed, specific snacks (gatorade, apple juice, popsicles, etc.), children in a playground, hospital, family, child with doctor.

    Because I want to give him time to work on his side of the project, I decided that my illustrations wouldn't follow a central character, and would instead be more of a guide that would show a variety of different scenarios. My main concern is that children won't connect to the book as much if I don't include a character for them to follow, but I'm not sure how to approach solving this without having the full text.

    I'm hoping to use this thread to post updates of the illustrations that i'll be creating for this project as well as way to share the process that will go into creating this. Hopefully it'll be relatively painless.



  • @Alicja-W that sounds like a fascinating project! My first thought was the possibility of developing an animal character based on your research about the disease. I can see that going either way—more approachable if there is some distance between the reader and a very cute character, but maybe less because “that doesn’t look like me”.

    But when I looked up MCADD children, I see there is a book featuring “Max the Monkey” with MCADD, so maybe you can develop a cute character with some general knowledge about children living with the disease. I find that organizations founded by parents or people living with various diseases are the best sources of information. Just a thought for how to get started while you are waiting for text.

    Looking forward to seeing your progress on this project—so nice of you to volunteer your time & talents!



  • @BichonBistro
    I love that idea! I've never designed an animal character before so now's a great time to try, and I think using an animal character would also make the book more inclusive. I'll pitch this to my partner and see if he can edit the text to fit a story with a character in it. In the meantime I'll get started on some character designs and more research. I agree that organizations founded by parents/people with the disease are great sources, and I'll be sure to do some more research before getting started on the spreads.

    Thanks again for your feedback!



  • Oh! That sounds like a fun project! Thats always hard to have to wait for text, but it sounds like you are going in the right direction. Looking forward to seeing your progress.


  • SVS Team SVS OG

    @Alicja-W this hits close to home for me. We found out when my second son was only a few months old that he was going blind. Turned out my wife has a genetic disease called Norrie. Not knowing at the time, he lost all his vision. Then he was diagnosed with Autism and then a few years later epilepsy. He is now 15. Love him to death and he is such a sweet kid. My daughter born after is fine since she could only be a carrier of the disease but my fourth son has it and they were able to do laser eye surgery within 24 hours of birth and he still has vision and he is 10. He is in medical journals because he baby born with Norrie that they tried this on.

    Anyway enough about them LOL I was thinking if you had different kids instead of a central character, what if there was like a small little frog or something that was in each image which would be like the narrator of the story?


  • SVS OG

    What a wonderful project!


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