Nearly 9 years ago, Mr. Nguyen Viet Sinh (born in 1993, Quynh Khe commune, Quynh Phu district, Thai Binh province) met and fell in love with Ms. Nguyen Thi Lien (born in 1998, in Hanoi). After that, Mr. Sinh and his wife gave birth to their first baby boy, Nguyen Viet Viet Anh.

Baby Viet Anh was born weighing only 600g, everyone thought he was malnourished and underweight. But when he was over 1 year old, Viet Anh showed signs of epilepsy, so his family decided to take him to the doctor.

“At that time, the doctor discovered that my parents had the same recessive gene, and that I had Seckel syndrome (bird-headed dwarfism). But the saddest thing of all, that was also when my daughter-in-law found out she was 6 pregnant with her second child. month. No miracle happened, the second child, Nguyen Hai Dang, also suffered from Seckel disease like his brother” – Mrs. Vu Thi Dien (Viet Anh’s grandmother) said sadly.

It is known that Seckel syndrome (also known as little person syndrome) is extremely rare, a genetic disorder characterized by slow growth and development, very small head, intellectual disability, and eye defects. big, hooked nose like a bird’s beak, narrow face and drooping lower jaw.

Accepting the truth, Mrs. Dien and Mr. Nguyen Quoc Lam (Ms. Dien’s husband) had to quit their jobs to stay home to help their children take care of their two young children.

Mrs. Dien confided: “For the past 7 years, my husband and I have been at home taking turns looking after our grandchild. Looking at him is so sad, we can’t hold back our tears. Both of us cannot speak, nor can we eat or drink normally. , only drink milk. Whenever they are dissatisfied or angry, they constantly bang their heads on the ground, so when I watch, I can’t take my eyes off him.”

While his school-age peers, Viet Anh is 7 years old this year and Hai Dang is 5 years old, both weigh only about 5kg and are 60cm tall.

Since the two children got sick, the family of six’s finances depended on the meager salaries of their son and daughter-in-law. During 7 years of struggling with illness, medical costs for the two children reached hundreds of millions of dong, and the family’s finances became even more exhausted and difficult.

“Because both children’s health is poor, they often go to the emergency room at the hospital. Viet Anh has to regularly go for monthly check-ups at the provincial hospital and buy all kinds of medicine. However, according to the doctors, this disease is not serious. It can only be cured and kept alive for just over 10 years, the world’s peak is 21 years, so we just try to take care of our grandchild every day or every day” – Mr. Lam choked on his words.

Feeling saddened by the fate of two children, Viet Anh and Hai Dang, Ms. Vu Thi Hanh (Quynh Khe commune, Quynh Phu district, Thai Binh province) said: “Everyone in the village and commune knows the family’s difficult situation. Mrs. Dien. We often share with each other, each person helping a little just hopes to help the two children become healthier.”