In a small rented room in Trieu Son Nam residential group, Hoa Chau ward (Hue City), Ms. Do Thi Bong (born in 1986) daily hugs her youngest son, baby Dang Nhat Phong (born in 2022) in her arms, heartbrokenly watching her child endure prolonged burning pains due to a rare skin disease.
Ms. Bong's family has 3 children. The two older children, Dang Nhat Minh (born in 2019) and Dang Ha Anh (born in 2020), are both obedient and know how to help their mother with small housework. However, the upheaval that happened to baby Phong completely disrupted the family's life.
Ms. Bong said that when giving birth to baby Phong at Hue University of Medicine and Pharmacy Hospital, doctors discovered abnormal signs on his skin, so they immediately transferred him to Hue Central Hospital for monitoring and intensive treatment.
Ten days after giving birth, when I went to the hospital to visit my child, I couldn't hold back my tears. The baby was wrapped in bandages, his skin peeling everywhere," Ms. Bong recalled with emotion.
Doctors diagnosed baby Phong with "congenital ichthyosis" - a rare disease caused by a gene mutation. Not only severe skin peeling, the baby also had body deformities, weak kidneys and many other complications.
Previously, Ms. Do Thi Bong worked as a seamstress with an income of about 7 million VND/month. However, since giving birth to baby Phong and discovering that her child had a rare congenital ichthyosis, she was forced to quit her job to stay home to take care of her child. Seeing her child in pain and peeling skin every day, the mother could only hug her child and cry. "I just hope my child is less painful and lives healthy like any other child," Ms. Bong shared.
Up to now, although he is 4 years old, baby Phong's body is always in a state of fracture, peeling and burning pain. His hands and feet are cramped and difficult to straighten, his eyes are upturned, and he cannot speak like children of the same age.
The baby is very painful, so she often cries, especially at night. There are days when the baby itches and bursts all over her body, I have to stay up to apply medicine continuously to the baby," Ms. Bong shared.
Bathing every day also becomes a nightmare for the whole family. According to Ms. Bong, every time she changes bandages or bathes her child, the baby is in pain to the point of crying because the cracks on the skin are burning.
If he doesn't bathe, he is prone to fungal infections and skin odor. But every time he finishes bathing and changes bandages, he has a pain that turns purple," Ms. Bong said.
Since childhood, baby Phong has undergone 3 long-term treatment courses at Hue Central Hospital. The first course in November 2022, the baby had to be in the Intensive Care Unit for 2 months in critical condition, requiring continuous ventilation. The cost of bandages at that time alone amounted to nearly 25 million VND.
The subsequent hospitalizations in 2023 and mid-2025 also caused the family to continue to struggle with money for medicine, treatment and bandages, each time costing tens of millions of VND.
Currently, every 2 months, Ms. Bong takes her child for re-examination to closely monitor the condition. In addition to special medicine, the baby also has to use a large amount of bandages every day to reduce pain and limit skin damage.
Each month, if the child's illness becomes severe, the cost of medicine and bandages can be up to 7-8 million VND. Whenever it gets better, the cost is about 3 million VND," Ms. Bong said.
The family, which was already difficult, became even more exhausted when both Ms. Bong and her husband were sick. Ms. Bong suffered from lung disease, often had difficulty breathing, but did not dare to go for examination for fear of being found to be seriously ill and having no one to take care of her child.
Meanwhile, her husband - Mr. Dang Van Thanh (born in 1988), also suffers from type 1 diabetes, having to inject insulin every day to maintain his health, he still tries to work as a construction worker to earn money to take care of his wife and children. One day, his health was weak, Mr. Thanh could only work half a day, his income was precarious but he still saved every penny to cover living expenses, medicine and treatment costs for baby Phong.
Ms. Bong's whole family currently lives in a small rented room, the rent is more than 1.8 million VND/month. Unstable income, money for her husband's medicine, money for children's treatment and living expenses make Ms. Bong and her husband often have to borrow money from relatives and banks to survive.
My family just hopes to have the conditions to take my child to Hanoi for better examination and treatment. Seeing my child in pain and helpless, I feel very sorry," Ms. Bong sadly shared.
Mr. Do Van Thanh - Head of Trieu Son Nam residential group, said that Ms. Bong's family is in particularly difficult circumstances in the locality. For many years, the couple has been fighting illness and bearing the cost of treatment for their child.
Ms. Bong's family circumstances are very pitiful, while the boy's illness requires long-term and costly treatment. We hope philanthropists will care and help so that Phong has more opportunities to be treated," Mr. Thanh shared.
All help for life situation LD26121 please send to Tam Long Vang Charity Social Fund - 51 Hang Bo, Hoan Kiem District, Hanoi. Account number (STK) 113000000758 at Vietinbank Hoan Kiem Branch, Hanoi; Account number: 0021000303088 - at Vietcombank Hanoi Branch; Account number: 12410001122556 - at BIDV Hoan Kiem Branch.
