'Tiny Professor' causes internet fever and his journey fighting rare disease

In the 1-minute clip posted by his family on social media, little Tien Minh impresses with his mischievous face, pencil in hand, sitting upright at his desk. When doing his homework, the boy concentrates intensely, sometimes resting his chin solemnly, sometimes looking pensive, making netizens excited and giving him the nickname "tiny professor".

But few people know that behind that appearance is a body that was once unstable and unable to absorb nutrients. Although he is over 7 years old, Minh only weighs a little over 8kg. An extremely rare disease causes him to develop more slowly than his peers.

Tien Minh is 7 years old, weighs just over 8 kg, and is 77 cm tall. (Photo: GĐCC)

Tien Minh (born in 2017 in Hanoi) is one of the first children in Vietnam to be diagnosed with intestinal epithelial dysplasia syndrome due to EPCAM gene mutation.

Ms. Bui Thi Lan - Tien Minh's mother said that in the first months of his life, her son was often hospitalized due to intestinal inflammation. He did not gain weight, had diarrhea no matter what he ate, and his body could not absorb any food. Worried, the family took Minh to many places for examination but still could not find the exact disease.

When Minh was 2 and a half years old, a doctor at the National Children's Hospital suggested the family have a genetic test and send samples to South Korea in hopes of finding the cause.

After a while, the doctor informed the family that Minh had intestinal tufts (intestinal epithelial dysplasia) due to a mutation in the EPCAM gene. This is an extremely rare disease, with an incidence of about 1/100,000. Minh's intestinal cells did not develop the villi structure to effectively absorb nutrients, so no matter how much he ate, his body still did not grow.

"Hearing the news that my child had a rare disease, my family was shocked and heartbroken. Since then, I put aside all work and devoted myself to staying home to take care of my child, only hoping to be strong enough to overcome fate with my child," Lan recalled.

During the 3 months of hospitalization, Minh was fed entirely by intravenous infusion. When the doctor could not find a vein in his body, he was sent home to rest. "There were many such episodes, the hospital stay was short or long. But I never stopped hoping that the doctors would soon find a treatment for my child," Lan confided.

During the first 5 years of his life, baby Tien Minh could only sit in one place, could not talk, and could not crawl or stand. Seeing his small, weak child who could not run or jump like other children, his mother's heart ached.

In August 2022, with a faint hope of a miracle, the family decided to take the baby to a rehabilitation center. The first few months, the journey was not easy, when seemingly simple exercises such as lying, sitting, leaning on hands or keeping balance, were a battle for Tien Minh.

Each practice session was filled with drops of sweat, heart-rending cries, and the exhaustion of a child accustomed to not having to move. For Ms. Lan, those were moments of both heartache and perseverance in encouraging her child, with tears falling silently many times.

Tien Minh learning to walk. (Photo:GĐCC)

After crawling well, Tien Minh started to stand and walk. Doctors prescribed orthopedic shoes for him, stiff and with joints to support his weak little legs. The heavy shoes pressed down on the child, making Minh frustrated and tired many times.

At times like these, Ms. Lan encouraged him: "You must try to practice walking, so that you can go to school and play with everyone." Listening to his mother, the boy quickly forgot about the painful falls and stood up to continue the fight. When Tien Minh took his first steps, his family was overjoyed. After a difficult journey, his condition and physical condition gradually improved.

In 2022, Lan and her husband gave birth to a second son through in vitro fertilization, named Binh An with the wish that life would be gentler for the two brothers. Lan recalled that once, Tien Minh touched his younger brother's chubby feet, then turned to his mother and said: "I also want big feet like yours". Minh's innocent words were like a knife cutting into his heart, causing his mother to burst into tears.

Tien Minh has just been accepted into first grade by a public elementary school. (Photo: GDCC)

Despite her newfound hope, Lan still felt heavy with worry when thinking about Tien Minh’s journey to school. She understood that her son was not like other children, so finding a suitable school was not easy.

She and her husband looked for many private schools in the hope that their child would have the best learning environment, but were rejected by all of them. The schools were worried that Tien Minh was too small, had poor health, could not keep up with class activities, and could not ensure his safety. Luckily, after much effort from the family, Minh was recently accepted by a public elementary school.

Next September, Tien Minh will enter first grade and go to school like any other child. Ms. Lan confided that every day, just seeing her child happy, trying hard and growing up a little more, that is the family's greatest happiness.

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