After 14 surgeries she still smiles at life
Strangely ill girl underwent the 15th surgery in Guangzhou today, 19 years old, she looks forward to a normal life in the future
"In 2005, he underwent two operations in Beijing due to the unequal length of his lower limbs. In 2010, 2012, and 2014, he underwent three operations due to left ear bone fibroma resection and left ear sinus atresia fat filling. In 2016, After the diagnosis of'Protus syndrome' in Shandong, I had 2 operations..." Pang Xiangcheng clearly remembered the time and location of her daughter Pang Shilin's operation. Over the past 15 years, Pang Xiangcheng and his daughter have almost traveled to the best orthopedic hospitals in China. After 14 surgeries, her body gradually recovered.
Despite the imperfect body and much more pain than ordinary people, Shilin and Dad have always maintained an optimistic attitude. The father and daughter are very grateful for the support and help of many kind-hearted people in the past ten years, and the careful treatment of medical care And take care. Because of the poverty in the family, the father and the daughter ate two meals at a meal, preferring to go hungry, but also to save money and try to repay the borrowed life-saving money.
Now, Shilin has come to Guangzhou and is undergoing the 15th operation today. On the 6th, Shilin accepted an interview with a reporter. She has always maintained an optimistic smile and is full of longing for future life. She learned Korean by herself and hopes to work like a normal person after the operation.
Tao Chunjie, Correspondent of Guangzhou Daily News
In August, the body was abnormal, 15 years old was diagnosed with a rare strange disease
Shilin is Pang Xiangcheng's first child, 19 years old this year. Her body was discovered by her grandmother when she was 8 months old. At that time, Shilin's left face was slightly larger than her right face, her left leg was longer than her right leg, and her left eye squinted. Pang Xiangcheng immediately ran Shilin to the hospital.
"At the beginning, the doctor couldn't find out what kind of disease it was, and just took the medicine and let us go home, but the medicine did not have much effect. Shilin's situation is getting worse every day." Pang Xiangcheng said, when he was more than a year old At that time, Shilin's left front teeth were longer than the right, the length difference between the left and right legs became larger and larger, and his face began to deform. After that, Pang Xiangcheng started holding Shilin non-stop to the hospital. Finally, at the age of 15, Shilin was diagnosed with Protus syndrome.
This disease can lead to abnormal development of the patient's face, arms, legs and knees, and different patients may have different body parts affected. There are only more than 200 people suffering from "Protus syndrome" in the world, and Shilin is unfortunately one of them. There is no treatment reference for this disease in China, the cause of the disease is unknown, and there is no drug control. The only treatment is to stage and stage, in different malformed parts on the left side of the body, through surgical correction treatment.
At the age of 4, Shilin started her first surgery. In 2016, Shilin was 15 years old. At this time, she had undergone 6 surgeries, and her left leg was more than 20 centimeters longer than her right leg. To this end, she underwent surgery, but only cut off 6 cm. In 2018, Shilin's sole fibroids progressed faster, and her more serious left foot could no longer walk down, so she was pushed into the operating room again.
Today, Shilin comes to Guangzhou to prepare for the 15th operation. The expert team of children's orthopedics led by Professor Li Xu, a well-known domestic orthopedic leader in children, has conducted consultations for Shi Lin and formulated a surgical plan.
At the outpatient clinic of Professor Li Xu of Guangzhou Huaxin Orthopedic Hospital of Shantou University, the reporter saw Shi Lin. She was wearing a dark hat and her mask almost completely covered her face. She was wearing a pink T-shirt and a long print with landscape painting The skirt, carrying a canvas bag, sat quietly with his father in the waiting area. In the crowd, she did not get too much attention, which is what she hoped from childhood. "She has to wear hats and masks wherever she goes from small to big, and there are no friends. She still feels a little inferior." Pang Xiangcheng said.
Difficulties in family life
Due to the poverty in the family, and to take care of Shilin, Pang Xiangcheng quit his job, making his family more difficult. In order to save money, sometimes the father and daughter can only sleep in the aisle of the hospital. They only eat biscuits brought from home for three meals a day. They never dare to spend an extra yuan.
"The most distressing thing for me was that when she performed her first head surgery in Shanghai last year, she was quite happy before the operation because she knew that this would correct her head deformity and she could become more beautiful; ICU inserted a variety of tubes such as a gastric tube, and her hands and feet were tied. She could not bear this kind of torture, and she begged the doctor to pull out the tube; when the second head surgery, because of the first In the shadow of the second operation, as soon as she saw the doctor coming in to pick her up to the operating room, her legs and feet became soft. When she was pushed into the elevator, she started crying and yelling at me. This was the first time she had With such an overwhelming reaction, my father’s tears couldn’t stop flowing. I walked away and dared not look at her again.” Recalling last year’s scene, Pang Xiangcheng, who was a soldier, couldn’t help but cry.
When she was in elementary school, Shi Lin had a hard time taking care of herself and needed someone to help her to use the toilet. So she had to wait for her mother to come to school every time to help herself go to the toilet, but her mother had to do farm work and could only come twice. For this reason, Shilin often does not eat or drink, for fear that she will go to the toilet without assistance. Because her condition was getting worse, she had to drop out of school by the fifth grade.
Fortunately, there are volunteers who are willing to attend Shilin's classes. Although the volunteers cannot come home to teach her homework every day, because of this, Shilin cherishes her learning opportunities even more. Pang Xiangcheng bought a small blackboard, only the first grade of education, he will teach Shilin to read and recognize words whenever he has time. Whenever these "teachers" were not available, Shilin taught herself at home. Nowadays, reading books and practicing brush writing have become Shilin's two hobbies.
Educate your daughter with gratitude and thank those who helped you
Shilin told reporters that she had never experienced the life of a normal person since her memoirs. She looked forward to a day when she could straighten her back and stand with her legs straight, and her eyes no longer squinted to face other people's eyes... Pang Xiangcheng also encouraged Shilin actively cooperates with the treatment and will go out to make friends and fall in love in the future.
In the past few years, Shilin started to learn Korean by herself, and now she has a simple Korean conversation. She has a wish, and hopes to go to Korea for plastic surgery in the future and become more beautiful.
This time in Guangzhou, Shilin came to correct scoliosis deformity and crazy long left leg. She was very lucky. In addition to Professor Li Xu, she was also the world's top pediatric orthopedic expert who is currently working in Guangzhou Huaxin Orthopedic Hospital and is best at spine side Professor Roye's diagnosis and treatment of bending surgery. After a comprehensive evaluation, Professor Roye believes that she is suitable for this spinal surgery.
This time the spinal correction surgery and the next leg surgery were funded through crowdfunding and social assistance under the condition that the hospital reduced the use to the greatest extent, and the medical expenses were solved.
"As a father, but to be qualified, be worthy of being a father's responsibility, do not abandon, do not give up, and even do not feel abandon, do my due diligence to be worthy of the daughter's warm heart title of dad every day; for the help of loving friends, I also Educate your daughter at all times to be grateful, grateful, moved, grateful, and return to the social friends who love the borderless." Pang Xiangcheng is very determined.