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A journey of rare courage

Liu Kaixin wants to spread awareness about her condition so that other patients get treated earlier

By MO JINGXI | China Daily | Updated: 2026-05-02 13:08
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Three paintings by Liu Kaixin convey a deep appreciation and love for life through rich colors and fine brushwork. [Photo provided to CHINA DAILY]

Then, in a hospital in New York in the United States, someone finally gave that answer a name.

"'What is this disease?' I asked the doctor," Liu recalled in her book.

"'Wait a second. Let me look it up,' she said."

"The answer no longer mattered," Liu wrote. "Those 'overly delicate symptoms' that had troubled me for years turned out to be a rare disease that even many doctors had never heard of."

The diagnosis explained what had long gone unexplained, but it did not make the illness any smaller. By then, the disease had already affected most of her organs. She would later survive two cardiac arrests and receive a pacemaker. Because of digestive failure, she cannot eat on her own. She has worn a feeding tube for more than a decade, uses a wheelchair much of the time, and weighs about 31 kilograms — about the same as she did at age 10.

Yet Liu has never presented herself only through illness. She paints and is a graduate of the Central Academy of Fine Arts and New York University. In 2023, she held a solo exhibition in Beijing titled UNFINIshed. She works as an assistant to the CEO of a listed artificial intelligence company. Last year, she published her first book, May You Live Freely and Boldly. Her second book, We Can Grow with Composure, was published in March.

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