For the past 14 years, Ms. Nguyen Thi Dao (born 1979) and her husband in Coc Ngang village, Pham Ngu Lao commune, Kim Dong district, Hung Yen province have suffered from constant pain. Two children were born with dry ichthyosis, causing the skin layers to peel off into large pieces.

Visiting the families of Mr. Tran Van Tung (born 1973) and Ms. Nguyen Thi Dao (born 1979), many people couldn’t help but feel sad when they saw their two children suffering from a strange disease that caused their whole bodies to peel off into pieces. g large array , sometimes the broken pieces of skin ooze fresh blood, making the babies cry out loud, crying so much that they become hoarse.

Looking at her two children with red eyes and rough skin like snake skin, Ms. Dao said in pain that for more than 10 years, she and her husband have never had a full day’s sleep, and the pain has never subsided. like love love for the children. In 2005, they welcomed their first child – baby Tran Thi Phuong Thao. However, that happiness did not last long when they discovered that baby Thao had unusually shiny skin, peeling off into pieces, then bleeding like no other. “Doctors at the district hospital said they had never seen such a case and advised my husband and I to take our child to the National Dermatology Hospital for examination. Here, the doctors told me my child had dry ichthyosis skin and it was a rare case, with no cure,” Ms. Dao sadly recounted. In 2008, they continued to give birth to their second child, Tran Thi Quynh Chi. Happiness was overwhelming when the child’s body was normal and healthy. But just because Quynh Chi is normal, she and her husband both think that baby Thao is just unlucky and sick, but the couple themselves are healthy and having another child will be okay.  In April 2014, they decided to give birth to their third child, a boy named Tran Hong Minh. But then again, Dao seemed to collapse when her child was born with the shape of her sister. The whole body is covered with wrinkled, dry and cracked skin. Through the gap in the skin, jets of blood shot out, making the boy cry. The disease causes the child’s upper eyelid to turn up and turn red, forming a very scary-looking circle.  The miserable mother said that there was no cure for her children’s illness, so every month the siblings would carry and take the children to the Dermatology Hospital for medication according to the doctor’s orders, and they were always given medicine. Ms. Dao’s day I still have to buy skin-cooling lotion to avoid cracking. In the summer, the weather is hot, sweat cannot escape, the whole face and body turn red, so the two sisters have to bathe at least 10 times a day, and always wear towels on their heads to cool their bodies. In dry weather, the skin layers crack and bleed, causing pain in the baby’s body.

Ms. Dao said: “I am a father and a mother. No matter what kind of child they are, I still love and care for them, but I feel very sad because the appearance of my two children makes people feel scared so they stay away from them.”

Simple dream 

Despite being so sick, little Phuong Thao always wanted to go to school like her peers. “When he was 5 years old, I took him to kindergarten. However, when I went to class, the other children were very scared and often called me “ghost”. Some were so scared that they got sick. I was afraid that my child would feel sorry for himself, partly because I was also worried that it would affect my friends and family so I wouldn’t let my child go to school anymore,” Ms. Dao recalled. 

That’s why little Thao couldn’t go to school, so her desire to go to school increased even more.

Previously, Ms. Dao worked as a seamstress, but after giving birth she stayed home to take care of her children. Money to pay for medicine for the child and the four mouths to feed the family has to rely on Mr. Tong’s job as a motorbike taxi driver. For nearly 10 years now, Mr. Tung has often been waiting for customers at Hang Dau booth (Hanoi). He loves his children so every month, he often returns to his hometown 2 or 3 times to visit them and then rushes back to Hanoi to make a living.

Ms. Dao said that money for medicine is limited, so sometimes she doesn’t dare to apply it much, only applying it to cracked areas. “Since the birth of my two children until now, when I heard that they had a strange disease that was difficult to cure, many people from the outside village came to visit and give them medicine, which made my family extremely grateful.”