Pity the 3-year-old child with epidermolysis bullosa, weighing only 9.5 kg in Nghe An

(Baonghean.vn) - Witnessing with our own eyes the pain that a child under 3 years old has to endure due to congenital epidermolysis bullosa (EB), we could not hold back our tears. That is the pitiful situation of Ho Phi Quang, residing in village 9B, Quynh Loc commune, Hoang Mai town. Although 3 years old, he only weighs 9.5 kg.

Every time he bathed and changed the bandage, Quang cried out in pain, scratching his wounds until they bled.

Baby Quang is the second son of Mr. Ho Phi Quyet (born in 1983) and Ms. Nguyen Thi Mai (born in 1987). When baby Quang was born, he weighed 2.9 kg, and at that time the disease only appeared in small, sparse spots.

Because they lived in the countryside and had limited knowledge, the baby's parents did not know what the disease was. They only saw that the baby was constantly crying and the blisters were spreading. Without proper care, the baby's toes were fused together, and the nails gradually fell off and stuck together. The baby could not lie still but often kicked and cried out in pain.

The baby’s parents only knew how to gently clean the wound, avoiding rubbing it to avoid ulcerating the wound. As time went by, the blisters grew and burst, forming psoriasis patches that made the baby itchy and painful all over. Except for his face, Quang’s entire body had blisters and psoriasis.

The toes lost all their nails and became fused.

In the summer, hot weather makes the disease develop faster. When the skin on the body is temporarily dry, blisters appear in the eyes and mouth, causing the baby to always close his eyes and not be able to swallow porridge, only able to drink less milk.

Since Lunar New Year 2016 until now, blisters have appeared in the baby's eyes 5 times, each time the baby's eyes were stuck together for 2-3 days. Due to serious illness, the digestive tract was damaged, so the baby had difficulty eating and drinking, poor nutrition, and every time he went to the toilet, his body would spasm. Although nearly 3 years old, Quang currently weighs only 9.5kg.

In 2015, Ms. Mai searched online and connected with the Congenital Epidermolysis Bullosa Club in Hanoi. Since then, the Club has provided her with bandages, anti-infective drugs, and instructions on how to care for her.

However, this disease cannot be cured and can only be treated with special care to reduce pain and complications that cause disability. At the same time, adequate nutrition must be provided. However, with the child's current condition, Ms. Mai cannot work, all expenses depend on Mr. Quyet's salary from working for hire. But in the countryside, finding a job is very difficult.

Confiding in us, Ms. Mai said: “Every time I change the bandage for my baby, seeing my baby cry, I can only cry too. My biggest wish now is for my baby to have milk to drink regularly every day and to have money to buy more nutritious food for him. My husband and I have not even been able to buy a plastic cabinet to store things and medicine for our baby.”

Blisters appeared all over his body.

Ms. Le Thi Thao - Chairwoman of the Women's Union of Quynh Loc commune said: "Quang's situation is very pitiful, but the Union's budget is limited so we cannot help much. I hope that benefactors will join hands to help the child fight this dangerous disease."

Thanh Thuy

(Hoang Mai Radio)