Expression of Hope by Touching Paintings

Taiwan Foundation for Rare Disorders held the painting contest, expression of hope  by paintings, inviting rare disorder patients to express hope and dreams on drawing  papers. Most rare disorder patients suffer from diseases but live in hopes. We expect  the paintings to express rare disorder patients’ courage and furthermore to encourage  the masses. We have received more than 130 entries, including sketch, oil painting  and pastille.  All entries demonstrated different art forms but one spirit, living with hope.

A-Chen, a 5-year-old boy, affected by Homocystinuria, which is a rare disease caused by enzyme deficiency. For limiting methionine accumulated, patients have to control diets  strictly. “I am so upset. Why can’t I eat meat? There must be monsters living in my body. Mom said the monsters are protein, which makes me sick. Dad said I would beat them by eating vegetable and fruits. I wish I were the best vegetable superman to defeat monsters”, A-Chen explained his painting.        

A-Wen, a 10-year-old boy, suffered from Thalassaemia Major, an inherited genetic anemia  caused by defection of golbin chain, which brings about deficiency of hemogolbin. Before  oral iron chelator launched, patients have to take 8-hour to 10-hour intravenous injection at  least 5 days a week. He explains his drawing, “There is a castle in my mind. The brilliant  fireworks explode in the dark; it light up my life. I expect my castle to open one day.” “I want to be a doctor to look for mystery medicines that could cure all kinds of rare diseases. 

Although the search will be long and tough, I will rely on God and His power that will lead me to carry out the dreams”, Zih-Jie explained her dreams. She is a 12-year-old girl, affected by Mucopolysaccharidosis type IV (MPS IV), a rare and life-threatening genetic disorder, caused by mucopolysaccharide storage disorder.

We invited judges to decide the superior of entries. The judges included Ms. Lien-Yen Wang, the tutor of rare disorder patients’ art class, Ms. Shang-Chiu Wang, the general manager of Genzyme Cooperation Taiwan branch, and Ms. Serena Wu, the board member of TFRD. The criteria are 40% of creation, 30% of color and 30% of composition. It was difficult to judge entries because they were so unique. The painters tried hard to express their beautiful dreams and hopes through paintings.

 “Besides painting skills, the most important thing of a painting is to touch audience’s mind”, the tutor Lien-Yen Wang said, “These painting have accomplished this goal.”