Sebin, the third of four siblings, has spent nearly her entire life in the hospital, including time in the NICU and ICU. She has now been hospitalized for four years due to the many complications that come with her diagnosis, MPS III, also known as Sanfilippo Syndrome.
“Every day, I fall asleep on an oxygen respirator,” said Hyemin, Sebin’s mother. “The oxygen saturation, increased liver levels, and numerous other symptoms of MPS always make caring for Sebin difficult.”
According ot Hyemin, though, caring for Sebin is no trouble for a family who loves her dearly.
“She lives with a lot of care from her siblings,” Hyemin said. “She is a lovely daughter to mom and dad, a princess to her brothers, and the prettiest princess to her sister.”
Through the ups and downs of a Sanfilippo diagnosis, Sebin remains the heart of her family. “She is always smiling lovingly in the process of struggling, and she is the happiness of my family,” said Hyemin. “Sebin is a princess of my family.”
