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A Family’s Struggle: Two Sisters Battling a Rare Disease
After being born for a while, the parents discovered that both of their daughters had a strange disease that caused their heads and necks to bend, weakening their health. This condition led to many people mocking them as “alien-like.”
In the past few days, on many forums, they have posted about the case of two little sisters, Hoang Thi Bach Tuyet (7 years old) and Hoang Thi Yen Nhi (4 years old), both residing in Lang Toi village (Yen Nguyen commune – Chi Hoa district, Hoa – Tuyet Quang province). They suffer from scleroderma, a rare disease that makes both babies look different from normal children.
Having this disease makes both sisters’ heads always tilted, their hair does not grow, and it is difficult for them to walk and stand. Their eyes also appear wide, causing many people to feel pity for them.
Even more heartbreaking is the family’s situation, as they face economic difficulties. The father and mother of two children have had to put all their money into taking their children everywhere, but the disease has not improved.
Talking to us, Mr. Hoang Van Toan (born in 1986), the father of the two children, cannot help but feel sorry for himself: “My wife and I got married in 2009 and in 2011 gave birth to a baby Tuyet. She developed normally like normal children. However, later, we discovered that she had strange symptoms, so the family took her to the doctor, and the doctors said she had scleroderma.”
The family said that the intelligence of Tuyet and Nhi was normal, but their heads were always tilted.
Knowing 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 said that in 2013, the family continued to give birth to the second child, Hoang Thi Yen Nhi. Nhi continued to suffer from the same disease as her older sister.
“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 to 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.
Talking more 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, and their heads are always tilted to one side. They can’t go to school due to poor health.”
Currently, the family of Mr. Toan and Ms. Si has moved to live separately. With their two daughters sick and in poor health, the husband and wife often have to take turns taking care of their children and use their money for medical treatment. Life becomes more and more difficult.
However, that is not why Mr. Toan and Ms. Si do not love their two little daughters. They said: “Even though the child is sick, we are always devoted to him. Whenever we have a little capital, a little money we can save, we will bring him to examine, treat, and pray for his illness to be relieved.”
Mr. Toan also said: “Due to my two sick children, I just stay at home to work in the fields like everyone else does. Sometimes I go to work as a helper to earn extra money in the fields to take care of the children. My wife has to go 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 said, both daughters are obedient, eat well, and sleep well.
Speaking sadly, Ms. Si and Mr. Toan said that the family’s fate was extremely long and difficult when both children had the same disease. Seeing the children in the village having fun, running and jumping as well as going to school made the couple burst into tears.
Their bodies are sick, so they are not like normal children.
Ms. Si confessed: “Baby Tuyet was only allowed to finish preschool at the age of 5, then couldn’t continue going to school because her health did not allow it, plus it was difficult to move, so the family decided to let her drop out of school. As of now, Nhi can’t even go to preschool.”
Currently, Tuyet and Nhi want to be cured.
Talking to us, Mr. Tran Huu Duong (Secretary of the People’s Committee of Yen Nguyen commune – Chi 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, take care, concern, and treatment of two children.”
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 helper, while Si Si works as a worker. Family life. The family is in a lot of trouble.”
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