In the past few days, on several forums, the case of two young sisters, Hoang Thi Bach Tuyet (7 years old) and Hoang Thi Yen Nhi (4 years old), residing in Lang Toi village (Yen Nguyen commune – Chiem district, Hoa Tuyet Quang province), has been shared. Both girls suffer from scleroderma, a condition that alters their appearance from what is considered normal for children.
The disease causes the heads of both sisters to be constantly tilted, impedes hair growth, and makes it challenging for them to walk and stand. Additionally, their widened eyes draw attention, eliciting pity from many who see them.
Numerous people who observe the two sisters, Tuyet and Nhi, liken their appearance to that of aliens, evoking sympathy from onlookers. The situation becomes even more distressing when considering the family’s economic hardships. Despite the parents’ efforts, who have devoted all their resources to seek treatment for their children, the disease remains unimproved.
Baby Tuyet (right) and baby Nhi (left) suffer from scleroderma, a condition that weakens their health and causes a perpetual tilt in their heads.
Speaking with us, Mr. Hoang Van Toan (born in 1986), the father of these two children, couldn’t help but feel sorry for himself: “My wife and I got married in 2009, and in 2011, we gave birth to a baby, Tuyet. Initially, she was developing like a normal child. However, later we noticed some strange symptoms, so we took her to the doctor, and the doctors diagnosed her with scleroderma.”
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The family mentioned that the intelligence of Tuyet and Nhi was normal, but their heads were always tilted.
Aware of his son’s illness, Mr. Toan and his wife, Dinh Thi Si (born in 1985), took their child everywhere for treatment, but the disease did not improve.
Mr. Toan also mentioned that in 2013, the family continued to give birth to their second child, Hoang Thi Yen Nhi. Nhi continued to suffer from the same disease as her older sister.
When he was born, Mr. Math’s children developed normally but later acquired diseases.
“When the children were born, they were normal, but suddenly discovered the disease after a while. We didn’t know what to do, so we just tried to work and earn money to feed our children as well as take them for medical treatment. Although the children have had the disease for many years, the disease has not improved until now,” Mr. Toan said sadly.
Baby Tuyet had to miss school due to poor health.
Speaking further about her child’s illness, Ms. Dinh Thi Si sadly said, “The two children still have normal intellectual development, but due to illness, their limbs are not strong, or they feel unwell. Their heads are always tilted to one side. Can’t go to school due to poor health.”
At present, Mr. Toan and Ms. Si’s family have moved to live separately. With both daughters being sick and in poor health, the husband and wife often take turns to care for their children and manage their medical treatment expenses. Life is becoming increasingly difficult.
However, this doesn’t diminish Mr. Toan and Ms. Si’s love for their two little daughters. They said, “Even though the child is sick, we are always devoted to them. Whenever we have a little capital, some money we can save, we will bring them for examination, treatment, and pray for their illness to be relieved.”
Mr. Toan also mentioned, “Due to my two sick children, I stay at home to work in the fields like everyone else does. Sometimes I work as a helper to earn extra money in the fields to take care of the children. My wife has to work as a laborer. The staff is also busy from morning to night, so they don’t have the conditions to take care of the children.”
Si mentioned that both daughters are obedient, eat well, and sleep well.
Speaking sadly, Ms. Si and Mr. Toan expressed that the family’s fate was extremely long and difficult when both children had the same disease. Witnessing the children in the village running, playing, and attending school made the couple burst into tears many times.
Their bodies are unwell, so they cannot function like normal children.
Ms. Si revealed, “Baby Tuyet was only allowed to finish preschool at the age of 5. She couldn’t continue going to school because her health did not allow it, and it was difficult to move her. Therefore, the family decided to let her drop out of school. As of now, Nhi can’t even attend preschool.”
Currently, Tuyet and Nhi want to be cured.
Speaking to us, Mr. Tran Huu Duong (Secretary of the People’s Committee of Yen Nguyen commune – Chiem Hoa district) said, “Baby Tuyet and baby Nhi have been ill since childhood. Until now, the disease has not improved, so it is very difficult for parents to cope with the disease, the care, concern, and treatment of the two children.”
The family lives in a shabby thatched-roof house.
Mr. Duong also added, “It is possible that Tuyet and Nhi have inherited diseases from Mr. Toan’s younger sister. Currently, Mr. Toan is in the locality working as a farm assistant and a helper, while Si Si works as a worker to support family life. The family is facing a lot of trouble.”
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