Paula and Rosie Quinn are the founders of Coming Up Rosies, a nonprofit dedicated to fulfilling Rosie’s dream to make bald kids like her smile confidently. At two years old, Rosie was diagnosed with alopecia universalis, an incurable autoimmune disease that results in baldness. From a young age, Rosie taught her parents how to embrace her difference by coming up with magical adventures of her hair each night before bed. Despite Rosie’s confidence, awkward questions and comments about her baldness started to bother Rosie. One day, her parents surprised her with a head scarf made from one of her paintings. Rosie immediately felt confident again, and wanted to share this feeling of pride with all bald children. Rosie lives in Chicago with her sister Caroline, her parents Paula and Larry, and their bernedoodle, Enzo. As a family, they love to go to Cubs games, have dance parties, and cook Italian dinners at home.

Q&A

What is Alopecia?

Alopecia is an autoimmune disease that affects nearly 7 million people alone in the US and develops when the immune system attacks the hair follicles, resulting in partial and/or total hair loss.  There are three types of Alopecia; hair loss in coin sized patches (Alopecia Areata), total hair loss on the scalp (Alopecia Totalis), or complete body hair loss; including eyelashes, eyebrows and all body hair (Alopecia Universalis). 

Can you tell us about the process of working with an illustrator, who depicted your daughter so well?

Working with the illustrator was a great experience for our family.  It was so important to us, especially to Rosie, that the character resembled Rosie.  The process began with us reviewing the current portfolios of illustrators who worked with Mascot Books, our publisher.  The illustration styles were all very diverse in artistic styles, so we @had a variety to choose from.  From the vast portfolio, we short-listed eight illustrators and we submitted a picture of Rosie for a self-portrait.  It was so fun seeing how these talented illustrators depicted Rosie, and we knew from first sight that we loved our illustrator, Chiara Civati.  Once we chose Chiara, she took our story and created a storyboard.  I did have a little bit of a vision of what illustrations I wanted to have, and we provided that feedback and waited anxiously for her first storyboard.  

From the initial draft, we only had to make some minor tweaks to make it more personal, like customizing Rosie’s room with her favorite stuffed animals, making the teacher look like her real teacher, changing the color of our clothes, and even adding our dog, Enzo, to the book.  I tried not to be too picky and was worried about infringing on Chiara’s style.  But in the end, she was quick and happy to make the changes.  The experience was so positive that I almost want to write another book, so I can work with her again.   

How did writing this book serve as a therapy to you?

Rosie was able to see the silver lining with her Alopecia.  I believe that this is attributed to her being so young when faced with the autoimmune disease.  She was two and very egocentric.  It wasn’t until she started to transition out of the egocentric stage and into developing a self-awareness, that we noticed her baldness was really bothering her.  I take it back, the baldness wasn’t bothering her, it was the conversation and questions about her baldness from other children or even adults that was the issue.  Questions like, “are you a baby or a boy?”, really got to her, and we noticed her little spark fade.  I would talk about this in great length in therapy, and my therapist suggested writing down my feelings.  Since I’m not big into journaling, I started a Google doc entitled “Rosie’s book” instead.  The book was never intended to be published, instead it was a tool for Rosie and her sister to use when we had to educate strangers.  Hindsight, the book was mainly for me, as a parent, since there weren’t a lot of resources to help families manage a physical difference, let alone Alopecia.  The writings really served as a tool for our family, and I hope that it can help others too.  Who knew that this therapy journal would be published to help others?  

100% of the proceeds from this book benefit your charity, Coming Up Rosies. Can you tell us about the charity?

Instead of focusing on fixing Rosie’s baldness, we shifted to raising a little girl who loves herself, hair or no hair.  From the beginning, Rosie wasn’t keen on wigs and grew tired of hats.  So, we asked ourselves, why not transfer some of her most-prized paintings onto a head scarf? We surprised her with a head scarf using one of her favorite paintings. Rosie was overjoyed and asked, “What about the other bald kids? We should make these for all the bald kids who look like me. Can we do that?” Just like that, a little gift to our daughter fueled a mission to help others, something my husband and I would’ve never dreamed up ourselves. 

Our mission is to restore confidence, happiness and pride to anyone struggling with low self-esteem during their medical journey, especially bald children. Our vision is a world where every child goes to sleep proud of their differences.  We accomplish this by donating art supplies to children’s hospitals throughout the U.S. Since 2016, we’ve donated more than 1,600 Smile Kits to hospitals and charity organizations around the world, in order for children to create their very own head scarves and superhero capes. Each kit provides a child an outlet of creativity, and the ability to wear their masterpiece with a smile.

What is your advice to parents raising a child with a physical difference?

Oh, this is a great question.  I think the biggest piece of advice is to follow your child’s lead and support them in whatever way you can.  We tell Rosie, this is your disease and you tell us how we can best support you.  If you want a wig, we’ll get you a wig.  If you want to wear a hat, we’ll buy you any hat you want.  If you want to be bald, be bald.  We love and support you.  From my experience, children with a difference want to know that you, as parents, will love them no matter what.  Rosie went through this stage of asking me questions, which ultimately conceived the “would you love me if…” game.  She’d ask, “would you love me if…I had one eyeball?  Would you love me if…I was in a wheelchair?”  As a parent, I thought, why is she asking me this, of course I will!  But, in Rosie’s mind these were valid questions in her mind, and she needed validation.  

When they feel that unconditional love and support at home, it puffs up their chest with confidence that they take with them everywhere they go.  Not to say that there won’t be bad days, because there will be— we all have them.  But, being their strong emotional support system, and showing them through your love and affection, they quickly learn that their heart makes them beautiful, not their outward appearance.

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