THE GIFT THAT KEEPS GIVING
THE GIFT THAT KEEPS GIVING
Copyright © 2019 by MiaThrives All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review. MiaThrives 30 Quarry Ridge Rd, Barrie, ON, L4M 7G1 Visit us at www.MiaThrives.com
From the Community Living with a rare skin disease has its challenges, but those challenges seem so much better when you know that you aren’t alone. Your generous donation provides MiaThrives with financial support, but more importantly, it enables us to continue to reach those who may be feeling isolated. Your contribution directly helps us to build our community so that this generation of Butterfly Children will live inspirational lives full of purpose. We thank you from the bottom of our hearts.
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INDEX
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From the Community
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What is EB?
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Our Mission
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Butterfly Child
9 Kaleidoscope 11 Emily 13 Novelette 15 Chris 17 Deanna 19 Melissa 21 Ed 23 Tessa 25 Matt 27 Liz 29 Mary 31 Maya 33 Lucy 34 Survey 35
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Thank You
What is EB? Epidermolysis Bullosa (EB) is a group of genetic conditions that result in easy blistering of the skin and mucous membranes. It is estimated to affect 500,000 people worldwide. Children born with this disease are often called “Butterfly Children,� since their skin is as fragile as the wings of a butterfly.
Our Mission MiaThrives is a non-profit organization dedicated to supporting the emotional needs of Canadian children living with EB. Our goal is to empower Butterfly Children to enjoy a social life filled with friendship, inspiration, belonging, and purpose, rather than one lived in shame and isolation.
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Butterfly Child Children are free spirits who see the world as their playground. They love to run, and jump and explore the magical world around them in constant wonder. Sadly, not all children are physically capable of doing so. Butterfly Children have skin as delicate as a butterfly’s wings - which makes being a child difficult at times. The irony is that the inner strength of a Butterfly Child is more like a warrior, facing each day with sheer determination. A Butterfly Child’s weakness is only skin deep.
Kaleidoscope Did you know a group of butterflies is called a kaleidoscope? And the entire purpose of MiaThrives is to create an EB community who group together (like butterflies do). Our community is inspiring the next generation of Butterfly Children and giving them a place to belong and thrive within. Whether it’s online through social media, or in person at special events, the MiaThrives kaleidoscope is getting bigger and stronger! We thrive better when we fly together.
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EMILY BOROS-RAUSCH
Horticulturalist Emily graduated with a Bachelor’s Degree in Material Art and Design from OCAD University, specializing in Textiles. She spent a few years living abroad and travelling before moving to the east coast of Canada, where she works remotely as the Creative Director for MiaThrives and runs a greeting card business called Greets and Giggles. View Emily’s Video
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NOVELETTE MUNROE
Poet Novelette graduated from The University of Toronto with a Bachelor of Arts, specializing in Philosophy. She is a poet, critical thinker, and volunteer grief facilitator. She has endured extreme challenges with her EB, yet she continues to press forward to encourage others. View Novelette’s Video
BUTTERFLY CHILD Each day you wake, to a tainted frame. Wings so fragile, you can hate how maimed. How hard it can be, enduring all your pain. How lonely it can feel, that no one understands your frame. Questions can be isolating leading to shame.
by Novelette Munroe But that doesn’t stop your wings from flying fearlessly every day. With wings of steel and grace, you climb the world to feel the sky’s embrace. You teach us unbreakable lessons of hope and the true heart of courage. Showing the world how fearlessly you thrive.
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CHRIS GRAF
Tattoo Artist Chris’s two children, Max and Malia, have EB, but, just like their father, they never let it slow them down. His knowledge of skin health and his passion for art led Chris to find a career as a skilled and successful tattoo artist by appointment at his studio space in Pickering at Ink Monkey Tattoo Studio. View Chris’s Video
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DEANNA MOLINARO
Painter Deanna graduated from the Visual and Creative Arts program at Sheridan College and has received two Curator’s Choice awards. She runs her business, Dinnovation Art, from her home studio where she works and spends time with her dog, Bruno. She specializes in commission paintings and handbags, and she sells professional prints of her work. View Deanna’s Video
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MELISSA VASSALLO IDIENS
Interior Decorator Most people know Melissa as Mia’s mom and the Founder of MiaThrives. What you may not know about her is that she has a career as an interior decorator. Her husband, Daryl, is a real-estate agent, and the two work side by side, with Melissa staging the homes that he lists. View Melissa’s Video
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ED VANDYK
Singer/Songwriter & Guitarist Ed’s charisma, passion, and love for music taught him to persevere when learning to play the guitar while also struggling with EB. He currently plays bass in a band and channels his creativity into his work as a singer-songwriter. View Ed’s Video
BLESSED
by Ed VanDyk
I will not waste this beautiful life The stars aligned and something happened right Shown the love in my weakest time Like a butterfly child I will thrive
Never knowing whats around the bend All I know is I’m making it to the end Being different makes you more unique
Cause I ……. I am blessed
Cause I……. I am blessed
Cracked and torn is my brittle skin Unlike my hopes and dreams unbroken Never ending everythings in sight Like a butterfly child in flight
When Im feeling alone I look around There’s more of use than ya think in this town Standing here not alone in hope Like a butterfly child in a Kaleidoscope
Cause I ……. I am blessed
Cause I ……. I am blessed Cause I ……. I am blessed
Like a butterfly child at my peak
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TESSA CONROY
Multimedia Artist Tessa comes from a family with EB. Her grandmother, father, brother, and herself are all affected by the condition. Tessa is in grade 9 at Rosedale School of the Arts. It is hard to believe she is only 14 years old when you take a look at her digital artistic creations.
View Tessa’s Video
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MATT TAYLOR
Hip-Hop Artist Matt is part of a family affected by EB that spans three generations. His father has EB, as does Matt himself, and now his son Eli also has the condition. Matt is using his passion for hip-hop music to share his story and raise awareness about EB.
View Matt’s Video
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LIZ TRINNEAR
Television Host Liz started her career in the media industry as a television host on Much Music after graduating with a BA from the Faculty of Information and Media Studies at the University of Western Ontario. Liz is also passionate about fashion and has experience modelling, acting, and producing. View Liz’s Video
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MARY HADDAD
Makeup Artist As a young woman in her early twenties, Mary knew something was wrong when a wound on her ankle wouldn’t heal. Doctors confirmed Mary’s wound was cancerous and her leg had to be amputated. She wished it were a bad dream. Through this difficult time Mary turned to makeup as a confidence booster and creative outlet. She has shared makeup tutorials on YouTube and has a new dream to one day become a makeup artist and help others feel empowered too. View Mary’s Video
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MAYA SPENCER-BERKELEY
Model and Social Influencer Maya Berkley-Spencer is an international model defying beauty standards by sharing images that raise awareness of her rare genetic skin disease, Epidermolysis Bullosa. Maya believes the modelling industry needs to diversify models in the industry and focus on body positivity.
View Maya’s Video
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LUCY BEALL
Writer and EB Advocate Lucy Beall seeks to change how society views differently abled individuals. Although she has the genetic skin disease Epidermolysis Bullosa that is currently without a cure, she has defied stigmas surrounding disabilities by writing for the Huffington Post and speaking at TEDX. View Lucy’s Video
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Thank You This generation of Butterfly Children will not feel ashamed and isolated.
You helped us make history! On EB awareness week, 2019, we held our first Kaleidoscope Gala and grouped our largest number of EB community members together‌ ever! It truly was a magical night that will live in the hearts of our community forever! The generous support shown for our MiaThrives organization and our EB community left us all feeling optimistic and uplifted. The feedback that we received made it evident that people understand what MiaThirves is all about. They understand the importance of supporting the emotional needs of this generation of Butterfly Children. That feelings of shame and isolation need to end! With your on-going financial support, MiaThrives will continue to group the EB community together. The emotional connections and companionships they will know, will strengthen their lives and help them form personal goals and achievements. We believe everyone thrives when they feel connection and belonging. This generation of Butterly Children will live inspirational lives full of purpose.
Together, we thrive. Thank you.
Melissa Vassallo Idiens, Executive Director
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30 Quarry Ridge Road, Barrie, ON L4M 7G1 | (647) 355–2285