A Rare Disease Angel with a Million-to-One Chance
    Yu Xinko is currently a first-year student in the Department of International Communication and English at Hong Guang University of Science and Technology. She was born in June 2001 and diagnosed with mitochondrial disease at eight months old.
 
    At one and a half years old, Xinko could only sit up with her hands on the floor.
 
    At six years old, she could only say five words: “Mom, I love you.”
 
    Xinqiao crawled until she was nine years old before she could stand.
 
    At fifteen, she could walk a short distance while holding someone's hand.
 
    Xinqiao has been diligently undergoing rehabilitation every day, with only one wish—to walk on her own, even if it's just for one day.
 
    Until she was 17, she believed she had mitochondrial deficiency syndrome. However, on March 11, 2019, genetic sequencing confirmed a diagnosis of “spinal cerebellar ataxia type 29,” resulting in multiple disabilities, including language, cognitive, and physical impairments.
 
    Throughout Xinqiao's life, she has faced numerous challenges that test her resilience, yet she never gives up on her goals. She expresses her observations and feelings about the world through vibrant colors, creating vivid and colorful depictions.
 
    Despite being confined by her illness, Xinqiao maintains a positive and proactive attitude. She hopes that through sharing her artwork and life journey, more people will become aware of rare diseases and individuals with multiple disabilities. She believes that with support and opportunities, they too can find a sense of accomplishment and the beauty of life's value on their journey.
 
    Especially, Xinqiao's rare disease is one in a million. She uses her smile to create her own miracle, expresses her inner world through painting, advocates for those who love life, speaks out for rare diseases, and has donated her hair multiple times to the most vulnerable children with cancer. She truly deserves the title of “Smiling Rare Angel.” From among 2,954 candidates recommended by people from all walks of life around the world, she stood out and was honored with the “2022 25th Global Love for Life Medal” by the Taiwan Zhou Daguan Cultural and Educational Foundation.
 
    Our foundation welcomes recommendations from people around the world for those who are striving, compassionate, brave, and accomplished—true warriors of life. (Taiwan Zhou Da Guan Cultural and Educational Foundation Global Award for Loving Life Nomination Hotline: 886-2-29178770, Fax: 886-2-29178768, Address: 3rd Floor, No. 52 Mingde Road, Xindian District, New Taipei City 231, Taiwan, Website: http://www.ta.org.tw, e-mail: ta88ms17@gmail.com).
 
The Day She Wanted to Walk
    When Xinqiao was two months old, her mother felt that this child was so well-behaved, never crying or fussing, just sleeping all the time. Even the pediatrician who administered the vaccinations did not notice anything unusual.
 
    At three months old, it was noticed that Xinqiao’s head and neck kept swaying back and forth and couldn’t be held upright, and her eyes often drifted upward. The doctor suggested waiting until she was older for a more accurate diagnosis.
 
    At eight months old, Xinqiao's mother took her to Taichung Veterans General Hospital for an EEG, MRI, and bone marrow fluid tests. She was diagnosed with “mitochondrial deficiency syndrome.” While there is currently no cure for this condition, medical understanding of mitochondrial diseases is growing, and treatment can be tailored to individual cases to monitor and improve symptoms.
 
    The doctor said that Xinqiao needed rehabilitation due to low muscle tone. Through rehabilitation, it was discovered that she had comprehensive developmental delays—she struggled with hearing, speaking, reading, writing, crawling, and sitting. Even when a handkerchief was placed on her face, she couldn't move it away with her own hands.
 
    At one and a half years old, Xinqiao could finally sit up briefly with her hands on the floor, but due to muscle weakness and lack of coordination, she would bump her forehead on the floor every day, leaving bruises on her fair complexion. During crawling, she also broke her teeth and hit her chin twice, requiring over thirty stitches. Despite these injuries, Xinqiao never gave up and continued her rehabilitation consistently every day.
 
    At six years old, with the help of a speech therapist, Xinqiao uttered her first words: “Mom, I love you.” She also shared her wish: “I hope one day I can walk to school, do homework with other children, and slide down the slide, sing, and draw.”
 
    At nine years old, Xinqiao finally found suitable assistive devices and began learning the phonetic alphabet. By the sixth grade of elementary school, she had mastered it, enabling her to read. Though her learning progress was slow, Xinqiao's unique brilliance remained undimmed.
 
    At the age of ten, Xinqiao wrote a simple poem: “When dark clouds gather, the rain falls gently. I go to get my little blue umbrella, put on my raincoat and rain boots, and dance freely in the water, feeling very happy.” These words expressed her longing to walk.
 
Mother's companionship on the journey of fighting illness
    Xinqiao was diagnosed with another rare disease, “Spinal Cerebellar Ataxia Type 29,” on March 11, 2019. To date, only 22 cases have been confirmed worldwide.
 
    Xinqiao's mother, Lin Shukuan, said, “This is a disease caused by a very rare genetic mutation. There are few cases worldwide, and it is even rarer in Asia.” However, Xinqiao has always been optimistic about her illness and has never lost hope or become discouraged.
 
    Facing such a major challenge in life, it is certainly not easy to remain optimistic. Xinqiao's mother, Lin Shukuan, said, “The important turning point in her mindset came when Xinqiao was just over two years old. To help her learn to speak, the doctor recommended cutting her shortened tongue-tie. However, in the ENT clinic, the mother and daughter were not yet prepared, and the doctor proceeded with the procedure. Xinqiao cried out in pain, and her mother also cried out of heartbreak.”
 
    In that moment when she was crying, Lin Shu-kuan said, “Suddenly, I felt that Xinqiao had stopped crying and was gently patting my shoulder with her little hand.” This made her realize that her emotions could affect her child, so she resolved to live every day with joy, which helped cultivate Xinqiao's optimistic and cheerful personality.
 
    One day, Xinqiao asked her mother, “Why did I get this rare disease?” Lin Shu-kuan replied, “Because you are so great.” She explained that Xinyan had received so much love and support and that not everyone experiences a genetic mutation. With only one in a million people affected by this disease, she is like an angel sent to bear this burden for many others. This not only helps others understand this rare condition but also reminds everyone that health is precious, life is even more so, and we must all cherish and love life.
 
    Xinqiao also asked her mother, “When will I be able to walk?” Lin Shukuan replied, “We just have to keep trying.” No matter how severe the obstacles, she believes that as long as one keeps trying, doesn't give up, and “waits long enough,” one will discover a child's strengths and illuminate their future.
 
Expressing the Inner World Through Art
    Xinqiao began learning to paint at the age of 12. Her mother, Lin Shukuan, said, “Learning to paint not only helps rehabilitate the fine muscles in her hands, but more importantly, through each painting, Xinqiao can express her wishes and inner world.”
 
    Due to Xinqiao's vision and lack of coordination in her limbs, she initially tried watercolor painting, but the brushes were too soft, causing the entire painting to smudge. She later switched to oil paints, which finally proved suitable for her.
 
    Controlling her trembling hands to hold a brush and paint is extremely challenging. Xinqiao spends 2 to 3 hours on each small section, and it takes at least 2 to 3 months to complete a painting.
 
    However, despite her short time learning to paint, she has already demonstrated exceptional talent. Her paintings are filled with rich, unique colors, and her brushstrokes are delicate yet full of dreams.
 
    Xinqiao is determined to use her paintings to raise awareness of rare diseases and advocate for the love of life.
 
    One day, the Economic Daily News provided a charity booth at the Taichung Wuri World Trade Center. In addition to promoting awareness of rare diseases, this gave Xinqiao the opportunity to showcase her work to others and receive praise and admiration from the audience.
 
    Xinqiao's mother, Lin Shukuan, recalls that an aunt bought one of her paintings. Xinqiao immediately turned around with a smile on her face and said happily, “Mom, it feels so good to sell something!” The sense of achievement from being appreciated is the driving force behind the independent lives of people with disabilities.
 
    Through painting, Xinqiao has improved her fine motor skills and cognitive abilities by observing the world around her. After five years of painting, she received an unexpected surprise: her vision, which was previously 0.2 in the left eye and 0.3 in the right eye, had improved to 0.7 and 0.8, respectively.
 
    Xinqiao's favorite painting is “Ballet Girl.” She has always dreamed of standing up and walking on her own, hoping one day to dance gracefully like the girl in the painting.
 
    Another painting, “Happy Children,” depicts a mother and cub walking on ice. Xinqiao wrote in the caption, “I feel like the little bear, happy and safe with my mother.”
 
Xinqiao has received widespread recognition both domestically and internationally.
    What is most commendable is that Xinqiao actively sought opportunities to share her story through her art, and she is deeply grateful for the support from people around the world. This has allowed more people to see the brilliance of hope, hear the voice of dreams, and inspire others to live life to the fullest. Together, we can soar on the wings of hope and love.
 
    July 2014: Joint Exhibition in Kinmen
 
    October 17, 2014: Joint Exhibition at the Taiwan Glass Museum
 
    April 2, 2015: Joint Exhibition at the Kamo Gakuen Art and Culture Exchange Event in Tokyo, Japan
 
    July 4, 2015: Joint Exhibition at the Taiwan Glass Museum
 
    July 25, 2015: Joint Exhibition at the Hsinchu Cultural Center
 
    September 5, 2015 Taiwan Glass Museum Joint Exhibition
 
    October 6, 2015 Kaohsiung Fuzhe Art Museum Joint Exhibition
 
    June 1, 2016, Taichung City Guangsan SOGO Cultural and Educational Foundation Joint Exhibition for Children with Rare Diseases
 
    October 5, 2016: Multi-Day Meiguang Electronics Technology Company Joint Exhibition for Patients with Rare Diseases
 
    October 28, 2017, Taichung City Cultural Bureau, Dazhen Cultural Center, “Sixteen Poses of Flight” Joint Exhibition
 
    March 11, 2018, Zhengsheng Broadcasting Station, Yunlin County, “Hearing the Sound of Dreams—Flying with Love” Exhibition. Paintings by Yu Xinko were used to create charity towels, with proceeds donated to social welfare groups in Yunlin County that support children with special needs.
 
    October 27, 2018, National Taiwan University Dequn Art Gallery Cross-Strait Star Children Art Exhibition
 
    December 3, 2018, Taichung City Cultural Bureau Art Highlights and Heyan Dental Clinic “Rare Angel Xinqiao - Glittering Light” Solo Exhibition
 
    January 18, 2019: “Rare Angel Xinqiao—Glittering light” solo exhibition at the Zhongqing Branch of the Taichung Military General Hospital.
 
    April 26, 2019: Participated in the 9th Taipei New Art Expo at Taipei World Trade Center Hall 3, “2019 Art for Compassion - 100 Celebrities” charity auction.
 
    July 16, 2019, Changhua Christian Hospital Art Center, “Rare Angel Xinqiao—Glimmering Light” Solo Exhibition
 
    September 1, 2019 Taichung Military General Hospital Art Highlights “Rare Angel Xinqiao—Glimmering Light” Solo Exhibition
 
    November 1, 2019: “Flying High with Special Aesthetics” exhibition at the Zhongqing Branch of the Taichung Military General Hospital, assisting other special students with artistic talents in a joint exhibition.
 

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