Artist: Zack Dumond Country: USA Condition: Pompe

Artist: Zack Dumond Country: USA Condition: Pompe I picked this flower to paint because I thought it was kinda like me. It's calm, cheerful and it's not afraid to take up a lot of space. I liked it a lot.

Artist: Angel WuCountry: TaiwanCondition: Niemann-Pick I am a fish, smiling with joy and happiness inward. Although I have been losing my health, I am still blessed, because I am loved by my family and friends from church. Their love not only colors my body, but also makes my world more beautiful. I will always keep my smile as repayment for their love. The Smiling Fish

Artist: Ruben KaimCountry: Argentina Condition: Fabry The piece of art that I made is colorful because life can be dark in some moments, and can be light in others. When I was younger, I found out about the disease, and I felt in the darkness. With the right information and the right medication, my life has begun to make sense.

Artist: Zih Yun Li Country: Taiwan Condition: MPS IV I hope to visit each and every country around the world. I believe each country has its own unique lifestyle. It will be fun if I have the chance to go traveling, opening my eyes to the world. Around the World

Artist: Sarah NobleCountry: New ZealandCondition: MPS III I am 23 years old and have been painting for several years now. My art displays my life living with MPS III. It is like living on a rollercoaster. Some days I feel wonderful and others I am not so well. Art is my passion and a way to escape this terrible disease. My goal in life is to live each day as it happens and help other kids and adults like myself. Hope

Artist: Jeannine Lipez Country: USACondition: Fabry This photograph represents the challenges life hands to everyone - whether they suffer from a LSD or not. The path of life is not clear for anyone. How we face that path and the decisions each person will make and their outlook on the journey is here. The steps are steep and disappear in the distance, but there is sunlight and the beauty and protection of the huge pine trees that could represent the support of family, friends, community, spirituality, whatever each person chooses. The setting is calm and warm, the path inviting. It is all in how you approach the challenges of your life. Steps

Artist: Kathleen Newcomer Country: USACondition: Pompe I took this picture of the Brooklyn Bridge. Although it was raining outside, my heart was soaring knowing that it was the love and sacrifice of friends that made this wonderful experience possible. Life is sometimes like that bridge in the rain. There may be tears of sorrow and pain in our life now but that bridge, representing hope and love, can carry us through to better times ahead. And that makes the struggle worthwhile. After all, how could we manage without bridges? Really, how could we manage without hope and love? Bridges

Artist: Igor Moita Country: Portugal Condition: MPS VI This drawing shows me and my classmates playing football. I’m happy because my classmates accept me as I am. Football Game

Artist: Wanderlei Cento FanteCountry: Brazil Condition: Fabry My name is Wanderlei and my artwork portrays the hope for a better quality of life for everybody affected by an LSD in the world.

Artist: Yolanda Santos Country: Portugal Condition: Pompe In my painting, the squares represent the various stages of the disease, the various colors represent good and not so good moments, the white borders mean that each stage is overcome with serenity and the green background represents hope.

Artist: Roy GreenCountry: Scotland Condition: Niemann-Pick During the week I am often found delving into the realms of art, music, radio, textiles, traveling and cinema. At present I'm working on a couple of mixed media projects, one of which I have just completed. I feel my interpretation of Monet's, "San Giorgio Maggioreat Sunset" using paint, pastel and tissue, portrays the ultimate sunset with the enhanced use of colour and texture. Roy’s Monet

Artist: Jansen HarkinsCountry: Canada Condition: MPS I - Family My name is Jansen, and I’m twelve years old. My brother Nicklas has MPS I. My painting expresses all the burning passion that you need to have if you have any type of MPS or even if you are related to someone who does. There are a lot of challenges, and the fire expresses the drive that you need to have to get through the tough times.

Artist: Ryu OtaCountry: Japan Condition: MPS II I currently go to school for disabled children. However, my disease has been progressing little by little. I am keeping well. I am a 14 year old boy who believes in Santa Claus. I drew a dragon since my name means dragon in Japanese. Dragon/Ryu

Artist: Veronica EulacioCountry: USA Condition: Gaucher My experience with Gaucher brought my family closer together. This is why I chose to paint an abstract portrait of the five of us. My siblings are patients as well, therefore our faces are the same color. My parents are carriers and that is why they are white. The placing of the faces also represents the genetic aspect of the disease. The green shapes represent the enzyme and the purple background means turbulence.The painting's technique involves different media.

Artist: HappyCountry: Taiwan Condition: Fabry I dream of having a pair of my own wings, to fly freely beyond the sky, so no matter how far I go, I won't feel tired. I close my eyes and happily spread my wings heading to my Paradise. Dreams of Flight

Artist: Gilberto AlvesCountry: Brazil Condition: Pompe Choosing to portray my family in this artwork has everything to do withthis story, my story. My wife and daughter are the most important people I have in my life, what is most valuable to me. They were there for me in the happy moments and are here for me as I tried to overcome this rough patch. For me, this program was the first step to overcome all of this. It was through this that I could reconnect with my real passion and once again find happiness. Just as my family is my motivation, this passion is also my motivation to keep going and to keep fighting the odds. My Family

Artist: Maicon de SouzaCountry: BrazilCondition: Gaucher The image portrays the things I love the most. I am playing my guitar and on that day I was able to have three of the most valuable things to me come together: friends, nature and music. This is an image of simplicity and beauty, from a very simple place, in the interior of Espírito Santo, in Ponto Belo. Three Valuable Things

Artist: Nidhi ShirolCountry: India Condition: Pompe This expression is my dream of playing, running, jumping and enjoying like any other child but I am not able to. Park

Artist: Aneta Pergerova Country: Czech Republic Condition: Gaucher Aneta is an 18 year old girl. She is a very communicative person, cheerful and gentle as her picture reflects. .

Artist: Paolo Zabala Country: Venezuela Condition: Gaucher Artwork with fingers and circles...abstract emotions

Collaborative Artwork Expression of Hope II RGD-GL-P121-06-09

Artist: Suzanne BarnesCollaborator: Ed & Marlene KoningCountry: Canada Condition: Fabry Suzanne Barnes: I was inspired by the authenticity of Ed and Marlene’s marriage, as it was shaped by Ed’s illness. Their relationship is an organic container, one that holds both beauty and pain, as well as great love. Rose canes, with elegant thorniness, are configured in an X and an O, and extend across two individual pages to unite them. The pages are sewn together with surgical cross stitches, in red linen. The letter X has a rich and plural symbolism: kiss, poison, this one, not this one, here lies treasure. In Zen, the letter O is a symbol of oneness, of now, of the present moment. The letters X and O in combination are often used by lovers as symbols for kiss/hug. There are three rose petals, one for each of Ed and Marlene’s three sons. Ed & Marlene: Thorns express the pain we have to live with as a result of Fabry disease. A crown of thorns reminds us of the sacrifice that Jesus made for us and is truly why we cope as well as we do. Beautiful rose petals show beauty amongst the challenges of life. There are always positives that come out of challenges in life. We continue on our journey of life as best we can, and in the end it is all worth it.

Artist: Sara DeAngelis Collaborator: Valentina ChernobayCountry: RussiaCondition: MPS I Sara DeAngelis: I asked Valentina, “What would you want me to paint? “ Her response was “a big pink heart.” The hearts represent her voice in the piece, as well as depict Valentina’s playful youth. I hope this portrait captures her happiness and loving spirit shared among her family. Valentina’s parents: We are very happy that Valentina was involved in this project. The picture is very good and very similar to a photo we sent previously. Valentina

Artist: Annmarie RebolaCollaborator: Marco Meyers Country: South AfricaCondition: Gaucher Annmarie Rebola: Marco is a bright, high-spirited, and active boy, both living with and spreading awareness of Gaucher Disease. His vigor and creativity inspired me to make a piece that builds off of his own drawing and poem. Marco’s optimism and activism are powerful, and just like art, can help change our world. Marco: My painting expresses hope, strength and joy. Living with Gaucher Disease is only a part of life for me. There is so much in my life to enjoy and be grateful, including the many blessings from our Higher Power.

Artist: Ainsley Bonham Collaborator: The Seng FamilyCountry: MalaysiaCondition: Pompe Ainsley Bonham: I feel privileged to have helped share the story of this inspiring family so dedicated to bringing support and compassion to those around them. It is my hope that the joyful spirits of Yen Ling and Wei Ling are communicated through this piece. Yen Ling and Wei Ling’s Father: Thank you for this lovely drawing, both of our daughters appear in front of the hibiscus, the national flower of Malaysia. They are among the pioneers who lead the way out for LSD patients in Malaysia, to plant the tree today and to let next generation people enjoy the shade. Yen Ling & Wei Ling

Artist: Justine Crosby Collaborator: Fida SobeCountry: IsraelCondition: Pompe Justine Crosby: After speaking with Fida about her Pompe condition, it became apparent that she herself is responsible for her survival. Fida’s connection to the internet was the key to her success story, so I felt that it was essential to include an image of her researching tool as a window to her life. The collage make-up of these images share her story, the support of her family and her community, what she gives back to her village, as well as the fight for survival against all odds-in her condition-all of which she miraculously made happen while sitting at her computer. Fida: I saw my painting and I liked it very much. Justine just put all the stages that showed up in my way and that is the thing I liked most in the painting. I really want to thank you and to thank her a lot. I want to congratulate you about this program, and I want to congratulate Justine about her gorgeous work. God bless all of you.

Artist: Gayle RosenCollaborator: Fran MadsenCountry: USACondition: MPS I Gayle Rosen: I wanted this portrait to become a voice for Fran’s inner and outer beauty, manifested through her relationship with herself, family, friends and MPS I. The large spiral symbol references the GoldenMean, a concept used to calculate proportion. One of Fran’s hospital bracelets is physically adhered to the artwork as a decorative bookmark, holding its place in her life, but not defining what is written on her pages. The bookmark holds the book open to an Irish blessing inspired by a grandfather whose memory she cherishes. Butterflies rise up as a quintessential symbol of transformation. I am in awe of this young woman and the choices she has made to live her life. Fran: I am honored to have been a part of this experience and thrilled with the results. Gayle Rosen has done an amazing job capturing the balance of education, family, friends and health in my life. Untitled

Artist: Lily Morris Collaborator: William LuoCountry: TaiwanCondition: MPS II Lily Morris: In this piece, I have created dreamlike fusion of imagery William describes as things that bring inspiration and happiness to his life. An underwater scene depicts his connection to fish, water and the natural elements of Taiwan. Fish are creatures of unique and beautiful mobility. William describes his love of geography and travel and even the freedom of a speeding train ride. In this piece, the blurred landscape of a forest interior is enclosed by the two provinces. I hoped to begin the viewer’s gaze with symbols of the past and lead the piece outward with the form of fish to represent the future. William: What caught my eye was a bright-colored and beautifully-shaped fish in the painting. I was quite surprised at first sight, not only because fish has been my favorite animal which is quiet and doesn’t hang around everywhere, but the fish in the painting resembled the koi that I had when I was a child. The turn of life is like a falling petal or drifting duckweed. It is unforgettable to come across you and share what I feel inside with you. I will always keep this wonderful experience of our encounter in my heart and sincerely wish you health and happiness. Inspiration and Hope

Artist: Juan Jose Barboza GuboCollaborator: Familia de MexicoCountry: MexicoCondition: Fabry Juan Jose Barboza Gubo: Seven our faces I was one of them The eldest is fine Always seated But the second one Pain in my supports Fractured structures Transplanting insides The third one fought My heart will stop The last made it Under the memory of the moon. Family statement: Thank you for having us participate in the program. We like the painting very much.

Artist: David Wentworth Collaborator: Igor Vujin Country: SerbiaCondition: Gaucher David Wentworth: I made this piece with the intention of showing all of Igor's interests. Everything we do in life is a story, our interpretations of stories make up our personal opinions, and our opinions dictate our interests. There is such an intense and intriguing story to Igor's life that I think it would be difficult for anyone to scratch the surface of his struggle. The tick and the blood-eating oxpecker may sit on the giraffe, but they don’t define it. Much like the disease doesn't define Igor- instead the memories and stories of his life do. It was an honor to be able to depict his story. Igor: I was very happy and surprised when I saw the picture. I think that the picture represents my life very well. I like the magnificent colors and wild animals too. The picture is really astonishing; the picture has a lion power.

Artist: Zack Dumond Country: USA Condition: Pompe