Young boy with rare digestive disorder given hope for a better life. And meets YouTube hero, too

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Young boy with rare digestive disorder given hope for a better life. And meets YouTube hero, too

Published: 06 May. 2024, 15:24 Updated: 06 May. 2024, 17:27

LEE SOO-JUNG
[email protected]

A 10-year-old boy with a rare disease, Yoon San, smiles and shows off some computer coding he did on Thursday at Seoul National University Hospital in central Seoul. [JANG JIN-YOUNG]

Ten-year-old Yoon San has never let go of his dream of sitting down for a good meal despite his chronic inability to digest food.

Suffering from pseudo-obstruction since his birth, he's hardly tasted any food in his lifetime because his intestinal muscles and nerves fail to transport the food intake, although there is no physical blockage.

When asked about his cravings, he answered, “I want to taste ramyeon and risotto, which are my favorites.”

Instead of eating actual food, Yoon relies on intravenous fluid therapy to receive essential nutrients. His mother, Lim, routinely administers liquid nutrition formula to her son. A feeding tube and needle are his lifeline.

No medication or surgery can improve his condition.

Although Yoon was able to have porridge and noodles several years ago, a soft food diet is no longer an option. He can no longer digest even soft foods because his intestines have grown over the years. He occasionally takes supplementary drinks to fulfill his nutritional needs.

Lim used to “feel guilty” when she had to eat next to her son. “It hurts to say ‘no’ to my son when I cannot give him the food he wants.”

Born with a chronic illness, Yoon is quite familiar with him being inside of hospitals. He underwent several operations even before turning one year old.

Yoon’s father drives from South Jeolla to Seoul — where Seoul National University Hospital is located — each month to bring 15 boxes of nutritional fluid and other medications for his son. Each journey takes more than 10 hours.

Yoon and his mother sanitize the tube connected to his body every four days and replace the needle weekly. Despite all the dedicated efforts, Yoon suffers from an infection and high fever twice a year.

Yoon has received a total of 19 surgeries so far, including the replacement of his feeding tubes.

Yoon is currently in the hospital for a high fever and pneumonia. Yoon was set to be discharged from the hospital a day before Children’s Day, which fell on Sunday.

Yoon San, left, and his mother Lim pose for a photograph in front of Seoul National University Hospital in central Seoul on Thursday. [JANG JIN-YOUNG]

Despite the hardships, Yoon has not let his condition get him down. Despite being shorter and skinnier than his peers, he was elected a class president in his school. Over half of his classmates voted for him.

Yoon’s three campaign promises of hosting Secret Santa games, having cookie parties and introducing metaverse technology to the classroom helped win voters’ minds and hearts. His next chapter is running for head of the student council, a school-wide body.

Unlike his friends, he wants no superpowers. He is delighted with himself.

“If I get to have an ability [that I do not have], I want to run fast and well,” Yoon said. He cannot sprint because of two ostomy bags attached to his body.

Yoon dreams of becoming a computer engineer.

His mother has been studying computer coding with Yoon, believing her son can keep up hope if he lands the job he wants. She has become an eager learner to make her son’s dream come true.

Recently, Yoon was admitted to the Institute of Creative Convergence Education in South Jeolla, a regional educational institute for students showing academic talent in science and technology.

“The admission was unexpected, and I just made a bold promise to my son that he could meet YouTuber Heopop,” his mother said, referring to the social media personality famous for his video experiments.

The 10-year-old boy wanted to meet the YouTuber and own a tablet computer.

Yoon San, 10, left, meets his role model, the YouTuber Heopop, who made a surprise visit to Seoul National University Hospital in central Seoul on Saturday. [YOON SAN'S FAMILY]

His wishes were realized unexpectedly the day before Children's Day. On Saturday, the YouTuber surprised Yoon and gave him a tablet PC.

"My son couldn't believe it at first," Lim said.

She added that her son said he "wants to become a grownup who shares good deeds like the YouTuber."

Lim understands that a miraculous cure will never appear. The family accepts that the illness will last Yoon's entire life, and they try to live each day to the fullest.

Lim thanked the medical staff, who congratulated Yoon on winning the classroom election and cheered him on for participating in a school sports festival.

Besides health care professionals and relatives, the private sector has also helped keep Yoon’s dreams and aspirations alive.

A donation of 300 billion won ($220 million) from Samsung Group's owning family has driven advancements in treatments for pediatric patients with childhood cancer and rare diseases.

The project, named after the group’s late chairman Lee Kun-hee, directly subsidized some 45 pediatric patients by providing 350,000 won per child. The “Lee Kun-hee Project” funded a long-term cohort study and formed a cooperative network between pediatric departments, pharmacists, nurses and nutritionists at 16 hospitals nationwide.

Seoul National University Hospital holds a symposium to share the progress and achievements made by Samsung Group's donation to treat pediatric patients with rare diseases and childhood cancer last November in central Seoul. [SEOUL NATIONAL UNIVERSITY HOSPITAL]

Prof. Moon Jin-soo, a pediatrician at Seoul National University Hospital overseeing the project’s joint research, said that state funding was insufficient to conduct research on pseudo-obstruction — a rare disease affecting less than 100 patients nationwide. Samsung's grant made an in-depth study possible.

“The donation will lay the groundwork for developing health policies and relevant laws,” Moon added.

Moon noted that children suffering from pseudo-obstruction can “blend well into society if proper support is given to them and they have no problems other than their intestines.”

An eight-year-old girl who goes by the pseudonym Soojin is also battling pseudo-obstruction. She goes to an alternative school.

Although she can digest a small amount of food, stomachaches frequently disrupt her food intake.

Her mother is always “on standby” to rush to her daughter’s school in case a mishap happens when her daughter replaces her ostomy bag. She also visits a hospital every two days to bring prescribed therapy fluid.

Soo-jin's mother said her heart always shatters when her child asks “when she will conquer the disease” or “why she is different from her friends.”

She once considered home schooling her daughter, but she is now relieved that Soo-jin can get along with her friends in school.

Another pediatrician who participates in the project, Prof. Lee Kyung-jae, said that decadelong research and observation of the child patients "will generate substantial research results — including the numbers of patients, intestine transplant surgeries and occurrence of medical complications.”

Lee added that the collected data could lead to substantial research findings and help create a home parenteral nutrition system — a life-sustaining treatment for patients who cannot process food, such as in foreign countries.

The medical professors envision the project tackling the imbalance in health care services and accessibility and standardizing treatments nationwide.

“In the past, my daughter and children suffering from such illnesses might have had no chance to live,” Soo-jin’s mother said.

BY HWANG SU-YEON, LEE SOO-JUNG [[email protected]]