Dalian, walking on the open road, you can constantly feel the slight cool sea breeze. The sun was shining, the blue sky was not covered by a single cloud, and in Lushun, the southernmost tip of Dalian, down a small hillside to a small brick bungalow, through a dark alley inside, you could see a small courtyard, which was Jia Lu's home. (Image from Oriental IC)
In addition to the clothes of adults and children, the yard also hung more than a dozen white towels. From the debris-piled corridor into the small room on the side, across a pink translucent curtain, Jia Lu was lying on the kang. Her body was too thin and small, so that her head looked very large, her face was unusually pale, her lips were beautiful pink, and the most attractive thing was the big eyes. From the moment I walked into the cabin, those eyes stared at the photographer, but I couldn't read what kind of emotions were contained in my eyes. Or fear? (Image from Oriental IC)
Just as the photographer took a few steps forward to get close to her, her eyes suddenly widened, she turned her head to stare at the ceiling, her hands and feet tightened in unison, her mouth made a painful and vague cry, it looked as if a pair of invisible giant hands were pinching her thin neck, Lu Mama immediately rushed over to hug her, put her head straight, and chanted "Don't smoke, baby doesn't smoke..." (Picture from Dongfang IC)
After about a minute, Jia Lu finally stopped convulsing, and the soul that had just been in her eyes seemed to be emptied, her eyeballs hanging dazed to one side, and her body softened. "Didn't scare you?" She had just had a seizure. Lu Mama smiled bitterly. Jia Lu was originally a cute and active little girl, when she was a child, she loved to poke everything, and she followed suit when adults did what she did, so lively that Lu's mother suspected that she had ADHD. It's just that I don't speak fluently since I was a child, and I have to express a sentence several times, and it is easy to fall down when walking. (Image from Oriental IC)
When Jia Lu was six months old, Lu's mother found that the child had a hard lump in his spleen. But because the family's economy was relatively tight at that time, I also felt that the child would not have a big problem if she had a small problem, so she was not taken to the hospital for examination. Until Jia Lu was six years old, Lu Ma and Lu Dad were running a small restaurant and were busy every day. At seven o'clock in the morning, when Lu's mother was at home to dress Jia Lu, she found that Jia Lu's nose was bleeding non-stop, which frightened Lu Lu's mother not lightly. The picture shows when Lu's mother gave Jia Lu a stomach tube, Jia Lu was choked by excessive saliva secretion. (Image from Oriental IC)
Lu's mother took Jia Lu to the clinic, the doctor used Yunnan baiyao and cotton balls to stop the bleeding, but it has not been good, Jia Lu moved his nose, the blood began to flow uncontrollably, until six o'clock in the evening to barely stop the bleeding, stop. Since then, Jia Lu has often suffered from nosebleeds, and she can't find out what the cause is. When she was seven years old, Jia Lu went to preschool, but the teacher said that she couldn't remember things, learned today, forgot tomorrow, and often peed her pants, so she wrestled. Jia Lu has epilepsy several times almost every day, her terminal nerves are severely damaged, and her hands and feet are also deformed. (Image from Oriental IC)
Lu Mom always remembered the day of August 18, 2008, at three o'clock in the morning, Jia Lu had her first seizure, and Lu Mom said that it was the longest epilepsy in so many years, which lasted about three minutes. Since this day, Jia Lu's situation has taken a sharp turn for the worse. At the 406 Hospital of the Dalian People's Liberation Army, doctors diagnosed Jia Lu with brain atrophy. From August to October, Jia Lu did not speak much and would bite when she was excited. The picture shows Jia Lu at three or four o'clock in the middle of the night will start coughing, epilepsy, Lu Mama will have to get up to take care of her, every day Lu Mama can only sleep for 3 or 4 hours. (Image from Oriental IC)
In October, Jia Lu was discharged from Dalian Children's Hospital and taken to her grandmother's house to recuperate. The family happened to be planting late wheat, and Lu's mother led Jia Lu for a walk in the field. At that time, Jia Lu's condition was still very good, and as a result, after returning home, Jia Lu had another seizure and never got up again. The picture shows Lu's mother holding Jia Lu in the small courtyard when the temperature is slightly warmer, but she can't go too far, because Jia Lu's immunity is very poor, and it is easy to get sick when she goes out. (Image from Oriental IC)
Jia Lu's illness has been dragging on, because someone in the family wants to get married and needs money, so it did not become a disease until May 2009, when Lu Lu's mother and Lu Dad finally took Jia Lu to Beijing. On the train from Anhui to Beijing, Lu Mama has been holding the weak Jia Lu, and the passengers around them have thrown curious eyes at them, but they have not asked much. Jia Lu did bone piercing in Peking University women and children, and then did enzyme tests in Union Hospital, went to many hospitals, tossed for a month, and finally diagnosed Jia Lu as a Niemanpic C type. (Image from Oriental IC)
The most typical symptom of Nemanpic is difficulty swallowing, even her own saliva is difficult to swallow, when saliva or phlegm accumulates to a certain extent, it will be choked to cough more than once, at this time someone must help her use the syringe to suck the saliva away. In addition, eating is also a big problem, and at first you can only feed her little by little. Before going to Beijing for treatment, Jia Lu was only thirty pounds thin, and the family felt that she was dying, so they made her a big red small birthday dress according to local customs, wearing Chong Xi. At the same time, Jia Lu's intelligence is also gradually deteriorating, regressing to the infant level little by little. (Image from Oriental IC)
At present, the medical community has not found a specific treatment for Nemanpic, and can only be treated for symptoms. There are examples of the use of a drug called meglut in foreign countries to treat this disease, but it is still in the experimental stage, and the price is very expensive, which is simply unimaginable for the Jialu family. For these reasons, after returning from Beijing, Lu Mama has been placing Jia Lu in Lushun's home to take care of her, and has not taken her around to seek medical treatment. The picture shows Lu Mama using a small syringe to extract sputum from Jia Lu, who was choked by saliva. (Image from Oriental IC)
From 2008, when Jia Lu lost her mobility, Lu Lu's mother has been taking care of Jia Lu every step of the way, because Jia Lu needs someone to pump sputum for her 24 hours. And changing diapers, feeding water, beating stomach tubes to feed meals, feeding medicine, these things, Lu Mama is not at ease with fake hands. She said that the rest of the family always had a bad stomach tube, so she had to come in person for three meals a day. The picture shows that all day long covered diapers, Lu's mother was afraid that her daughter would be uncomfortable, so she took them off, and as a result, the diapers were just taken off, jia lu had a seizure, incontinence and peed on the ground. (Image from Oriental IC)
Lu Mama cooks in the kitchen, the kitchen and Jia Lu's room is only separated by a wall, Lu Mama as long as she hears a little movement, she will immediately put down her work and run to the next door to take care of Jia Lu, and as a result, a meal will be interrupted several times to complete. (Image from Oriental IC)
Jia Lu's body immunity is poor, easy to cold and flu, Lu Mama does not dare to take her to the hospital to see a doctor, because the hospital once she sees Jia Lu's situation mostly dare not accept, or prescribe very expensive medicine, so Lu Mama learned to give Jia Lu some drip herself. The picture shows a one-year-old cousin climbing into Jia Lu's bed to play. (Image from Oriental IC)
Trapped in this small room of several square meters every day, Lu Mama, who is optimistic by nature, gradually finds a way to understand the stuffiness. She will sing and chat with many netizens in the online voice chat room, and will also hold Jia Lu in her arms to talk to her, bask in the sun, watch TV, and surf the Internet. Lu Ma's sister returned to her mother's house, taking her one-year-old young son, this fat little naughty and brought a lot of joy to Lu Ma. The picture shows that Lu Mama still hides a lot of cute earring earrings, and she has to wear them every time she goes out. (Image from Oriental IC)
Due to the perennial care of Jia Lu, Lu Ma seems to have forgotten her own existence, she said that leaving Jia Lu for a long time will be very anxious, just want to hold her all the time, by her side. After talking about it, Lu Mama didn't have much expectations, she only hoped to take good care of Jia Lu all the time, or when she finally left, Lu Mama also fulfilled the responsibility of a mother. The picture shows that when Jia Lu was quiet, Lu's mother went to the house next door to find her sister to play with her young son. (Image from Oriental IC)