Siblings fight disease by painting and singing

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Siblings fight disease by painting and singing

Two siblings fighting the same rare disease are also passionately pursuing art. Lim Yun-ah, 20, an art student at Sahmyook College, and her brother Lim Seung-jun, 19, a music major at the same school, both suffer from phenylketonuria, a congenital disease with symptoms similar to those of cerebral palsy. Victims lack an enzyme needed for their metabolism. For sufferers, drugs are as crucial as meals for daily survival.
Despite needing expensive medications and facing physical challenges, both have opted for notoriously impractical professions ―painting and singing.
But years of hard work has paid off, as Ms. Lim opened a private exhibition of her paintings in Insa-dong yesterday.
“I drew flowers, because they are always near me...” To say the sentence took Ms. Lim more than one minute.
The siblings were introduced to the public by the JoongAng Ilbo in 1999 when their physical condition was much worse. In the past few years, they have gone through a lot. Their family sold their house and moved to a small basement apartment in order to afford their medicine, which costs about 100 million won ($100,000) a year. Luckily, the Korean Organization for Rare Diseases was founded in 2001 to support people with their condition. About 100 patients suffering phenylketonuria including Yun-ah and Seung-jun have also begun receiving government subsidies for their drugs.
Since then, more good things started happening. Yun-ah was offered free painting lessons by her art teacher at high school. To draw one fine line, it took two or three hours, but she refused to give up, practicing all night.
Such efforts were rewarded. Yun-ah made it to the art department in Samyook University, where she majors in children’s art. Her art professor, Kim Cheon-jeong, looks after her with great care, even giving her private lessons during vacation. Meanwhile, her brother Seung-jun has struggled hard to sing. Even though his voice often goes off key and his pronunciation can be unclear, he was invited to the National Assembly on May 25 to celebrate the day designated for people with rare diseases. Jang Sa-ik, a well-known Korean traditional pansori singer, became an enthusiastic fan of Seung-jun after watching his performance. A few days after the performance, Mr. Jang visited him and his family with some rice cake that Seung-jun likes.
Yun-ah’s exhibition is until next Wednesday at Hakgoje Art Center in Insa-dong, central Seoul. Her dream is to teach fine art to people with disabilities. Seung-jun, on the other hand, said, “I want to do many things like be a movie actor, back stage dancer and social worker.”


by Hong Soo-hyun

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