Cover reporter Su Dingwei
"I know what she looks like when she's 20 years old, two meters tall and her body is bent!" A 49-year-old mother in Nanchong, Sichuan Province, asked for help from the cover news, and her daughter grew up too fast! The 13-year-old girl is 1 meter 82 tall, 8 years, in order to cure her daughter's "long illness", she has emptied all her savings, and still owes 100,000 yuan, and for the rest of her life, "What kind of future will my daughter and I face?" ”
Be with your classmates
Daughter grows crazy Mom worries
It costs hundreds of thousands of dollars to check and treat the disease
At the age of 35, zhang Susu, an elderly young woman, gave birth to her daughter Qinqin, "I am the first marriage, and my husband is 7 years old!" "Except for the love of falling on the head and the eyes are short-sighted, the daughter and other babies are no different!" Since the age of 5, Zhang Susu has been holding her daughter in the major hospitals in Chengdu and Chongqing, at that time, doctors tended to have problems with the eyes and bones, and did not check what the disease was. Later, the daughter slowly grew wildly, and in two or three months she had to change the size of her clothes and pants. By the time she graduated from elementary school, her daughter was already as tall as herself, 1 meter 62. In the one and a half years since Qinqin Junior High School, her mother has not grown a centimeter, but she has gone up 20 centimeters and become a little girl of 1 meter 82.
Zhang Susu worked odd jobs in a hospital in Nanchong City, washing and supplementing, and earned more than 2,000 yuan a month. On this meager income to support the family, you have to lose some money from between your teeth to treat your daughter. "My husband has a job, but he never takes a penny out to treat his daughter, and he doesn't know what her condition looks like." For 8 years, Zhang Susu ran to the hospital as soon as he had a little money, always hoping that the doctor would give his daughter a hope and future. In the past 8 years, in order to check the body and treat the disease, it has spent more than 200,000 yuan, and now it still owes more than 100,000 yuan to relatives and friends.
In a cramped old house, the cover news reporter met Zhang Susu's mother and daughter, the two did not speak, and their hearts were heavy. Qinqin is slender, with long hands, long fingers, long feet, long soles, wearing thick glasses, and a bad face, "Her eyesight is not good, more than 1200 degrees, the crystal is about to fall off!" "The daughter is the heart meat of the mother, and Zhang Susu, who is fast and fast-talking, talks more when he talks about his daughter." I ran to many hospitals and met many doctors, and finally confirmed that my daughter had 'Marfan syndrome'. The reporter looked closely at qinqin's palms, and a pair of long hands were like the palm images in CT films, which were obviously longer than the fingers of ordinary people. Qinqin did not speak much, occasionally interjecting, correcting her mother's individual words.
It turned out to be Marfan syndrome
We look forward to the help of experts and caring people
According to experts, Marfan syndrome, also known as spider finger (toe) syndrome, commonly known as spider disease, belongs to a congenital hereditary connective tissue disease, which is autosomal dominant inheritance and has a family history. Marfan syndrome belongs to the autosomal dominant disease (a genetic disease caused by dominant genes present on the autosomal body), which has familial genetic characteristics, the incidence of male and female is equal, vertical transmission, and generational disease. If the patient marries a normal person, half of the children born are normal people and half are patients. It is a disease with a low morbidity but a very high mortality rate of 0.04‰ to 0.1 ‰, that is, about one to four out of every 100,000 people. 85% of patients are genetic, and the natural survival life expectancy of people with this disease is only 32 years on average, and the mortality rate within 3 months after the onset of the disease is more than 70%. The disease was first reported in 1896 by the French pediatrician Antoine Marfan, hence the name of the disease.
Mother and daughter
Marfan syndrome patients are usually different from ordinary people, mostly between 1.8 meters and 2.1 meters tall, fingers and toes slender spider feet, which is like a gift from Heaven, making them a "genius" in many fields, but it seems to be a joke on them, so that this "gift" is always taken back early, and the genius falls, which is infinitely deplorable! Patients with Marfan syndrome have long thin fingers and strange bones. Lens dislocation, high myopia, cataracts, retinal detachment, photophobia, flash sensation in front of the eyes, etc. More men than women, 50%-80% of patients have eye diseases. About 80% of patients have congenital vascular malformations, common aortic dilations, and heart valve insufficiency. This is a congenital heredity, and the best prevention and treatment is premarital examination and early treatment.
Loves meat and seafood and hasn't been in physical education class for a long time! Zhang Susu cut down on food and clothing, as far as possible to meet his daughter's preferences, Zhang Susu persistently believes that her daughter will have a future, in case a miracle appears! She looks forward to the help of experts, and hopes that caring people will help her family that is in turmoil, "as long as possible for her daughter's life!" (Pseudonym in the text)