The birth of a newborn baby can bring a lot of joy to the family, but for some families, the child is destined to suffer more misfortune than others as soon as it is born.
There is a little girl named "Lan nini" on the short video platform.
God gave her unparalleled beauty, but closed a window for her.
Nini in the video has a pair of bright eyes, a smile, and her eyes are curved like a crescent moon. The eyelashes are thin and long, and at a young age, it can be seen that it is a beautiful embryo.
Nini's mother wrote on the platform homepage that I gave birth to a child with a rare disease, who could not look at each other, could not defecate, and could not speak, but this did not affect my love for you. Nini came to the human world, she came to cross the robbery, and after the robbery, it will be fine.
Nini has suffered from a rare genetic disease that cannot be cured since she was a child, and now that she is 6 years old, she still cannot speak and cannot take care of herself. Doctors say nini will be accompanied by intellectual degradation in the future, and it is likely that she will become a vegetative person who cannot move in the future.
Everyone still felt sorry, let alone Nini's parents. When the baby held in the palm of the hand will face the risk of degenerating into a vegetative person in the future, what pain did Nini's parents endure along the way?
1. The joy brought by newborn children
Nini's parents grew up in a village in Anhui Province, but their personalities are very different.
Girls belong to the type of people with beautiful mouths and sweet mouths, and everyone is happy to take a bite of an aunt, uncle. Eating is never picky eaters, adults eat whatever they want, and neighbors praise this child for being easy to raise.
Boys have always had a no-go attitude towards anyone, and they have been picky eaters since childhood. Often take advantage of the adults' inattention to secretly pour the rice in the bowl to the puppies playing on the side of the road. Every time I am found by my family, I will inevitably be beaten and scolded.
Once, at noon, after the girl sneaked a piece of meat from the boy's bowl, the revolutionary friendship between the two began. After that, every time the boy came home, the bowl was clean. The parents also thought that being with other children could stimulate appetite, so they let the little boy sit next to the little girl with a small rice bowl and a small bench every day when he ate.
Later, when I was a little older, junior high school and high school were all one class. After graduation, the two naturally walked together, and in January 2015, the two held a wedding in their hometown in Anhui Province.
On February 14, 2016, Valentine's Day, Nini was born in a hospital in Anhui. After Nini was born, even nurses praised Nini for her good looks.
Nini was like a gift from heaven, and the newborn child in the next ward cried all day, often at two or three o'clock in the middle of the night. This left the novice parents helpless, tossing and turning for several nights, and the eye sockets were already covered with black circles.
Nini almost never cried, or stayed silent on her own, or slept quietly. So after Nini was born, her parents hardly bothered too much, they boasted every time, it was a blessing to have Nini's daughter, and she knew how to think about her parents everywhere at such a young age. Quiet and obedient, he can eat and sleep.
When Nini was 5 months old, the vaccine went on, and she didn't even hum, just looked at the nurse who was giving the injection and then turned her head to look at the fan and light on the ceiling of the room. Therefore, Nini's parents often feel that Nini is an angel sent from Heaven, a unique child. Unlike other children, they are independent from an early age, and they are a person who can "become big things" in the future.
They also fantasized that when Nini was older, the family would go to the amusement park in parent-child costumes, hold her little hand, and listen to Nini's milky voice and call Mom and Dad.
Until Nini was six months old, her parents were immersed in the joy of parenthood. To them, Nini didn't seem to notice anything different than being quieter than the other children.
2. Thunderbolt news on a sunny day
When Nini was six months old, they once took Nini to relatives. It just so happens that the relative's family also has a child who is about the same age as Nini. The child was already able to use his hand toy to distinguish between acquaintances and strangers. The adult supported the child's waist and was able to stand briefly at the table for a short time.
In contrast, Nini can't even stand her head straight, her hands can't hold things, you call her name, she can't seem to hear any reaction, it seems to develop more slowly than children of the same age. At the suggestion of relatives, Nini's parents took Nini to the hospital for examination.
The doctor just looked at Nini and said that there must be something wrong with the child like this. A series of lists were then issued and handed to Nini's parents for them to take their children for examination.
After a series of tests, the conclusion of developmental delay was finally drawn in the medical records. Doctors say this is commonly known as mental retardation, as for the cause of developmental delay, there are genetic factors, it may also be the mother's infection in the first trimester of pregnancy, or it may be the lack of oxygen at the birth of the child. At present, the reason is not clear. I can only wait until Nini is older and continue to observe.
After learning the results of the examination, Nini's mother secretly cried. She couldn't figure out why such a well-behaved daughter had to suffer such bad luck. Or did Nini's father comfort her, "Now that the child is still young, maybe Nini will get better when she is older?"
However, after more than half a year, Nini's condition did not improve, but became more and more serious. She seems to have no perception of things in the outside world, always immersed in her own world, with no one else in her eyes. After walking a few steps, she would fall, and she did not respond, always looking at a place obsessively, looking at things very much on tiptoes, not looking at people, and not having any oral expression.
Even the neighbors in the village were talking behind their backs, saying that Nini was a stupid child with a dumber brain than other children. This made Nini's parents panic, so when Nini was more than one year old, her parents took her to the big hospital in Shanghai for examination. The results of this examination showed that Nini's symptoms were highly similar to autism, but the real diagnosis had to wait until Nini was three years old before she could make a diagnosis for the child's specific situation.
Nini's parents are both helpless and helpless, before the doctor said that it was just stunting, how did she change to a hospital and be diagnosed with autism?
They hugged Nini and squatted at the subway entrance, watching the crowds coming and going, not knowing where to go for a moment. At this time, Nini's eyes were blank, and she was completely unaware of all this. Just staring blankly into one place.
In the 40-degree summer heat of Shanghai, they were cold from head to toe, but Nini in her arms could not feel the desperate emotions of her parents.
Looking back on Nini's past performances now, they missed too many opportunities to find out the problem.
Nini never showed her emotions to the outside world, and they used to hold Nini and kiss her, saying to her, little baby, Mommy and Daddy love you. She was always indifferent, couldn't laugh or cry, and didn't even want to look at her parents.
They had also repeatedly wondered if Nini had a hearing problem, but they quickly dispelled their doubts. They never associated Nini with the three words autism.
3. Embark on a long road of treatment
After consulting a large amount of information, they learned that autism is an unusually terrible disease and called it a mental cancer. But it's more desperate than cancer. Because there is no cure, it can only rely on behavioral intervention.
Autism is a long treatment process in order to get Nini better treatment. In 2017, Nini's mother quit her job and took Nini to Hefei. My father stayed in his hometown to work, because Nini's treatment cost a lot, and almost every few days she had to go to the hospital for electric shock and acupuncture treatment, and also to go to the rehabilitation classroom.
Every parent who cares for an autistic child has had countless moments of collapse. Although Nini has been receiving treatment, Nini has made little progress.
Leaves fall into the water and ripple in layers. But taking care of an autistic child, you give a lot, but you don't necessarily gain. When the child was 2 years old, Nini's mother was still trying to teach her, hoping to hear her call out to her mother one day. But no matter how her mother taught, Nini did not have any empathy at all, and she always had a little response to her mother.
Taking care of Nini, the pain and suffering of her parents is indescribable, but they never felt a trace of regret.
They firmly believe that Nini will get better slowly. One day, Nini will feel the tenderness and love of her parents for her.
Once, when I took Nini to the hospital, I saw someone in the hospital room taking a video with a mobile phone and posting it online. Someone told her that shooting videos can be brushed with gifts, can make some money every day, Nini's mother listened, on the one hand, can record Nini's daily life, on the other hand, can also earn some living expenses, it is also very good. After all, the family spent almost all their savings in order to treat Nini's illness. Nini's grandmother is very old, but in order not to burden the family, she still works outside the home.
In this way, Nini's mother would record some of Nini's daily posts online every day. Nini in the video is like a doll, born good-looking, and soon received the attention of many netizens. They will encourage Nini in the comment area to hurry up, and they will also praise Nini for being beautiful.
These kindnesses from strangers gave Nini's mother more warm strength. So every day Nini's mother would dress Nini up beautifully and insist on taking a video of her.
As for the appearance of the outside world, she did not know anything.
Of course, there will also be people who question that she is holding the child hype. At first, she was angry and would respond with Nini's medical records to explain. But then I thought that there was no need to do this, and it was more to encourage the people who supported Nini.
Also on the short video platform, Nini's situation was noticed by a medical doctor at Hunan Xiangya Hospital, and Nini's mother was contacted. He said Nini's illness was not like ordinary autism. Jean sent Nini's blood samples and medical records to him for diagnosis. A month later, Nini was told that she had a neurodegenerative disease with cerebral iron deposition type 6 gene disease.
This is a disease caused by genetic problems that can worsen over time. Children are mentally slow and have certain autistic behaviors. In the future, all functions of the body are likely to slowly degenerate and eventually become vegetative. Until finally unable to move and swallow.
After learning this news, the couple could no longer control their emotions and cried loudly. This means that the previous efforts for Nini have been wasted.
I can't remember how many times I cried, but for a long time, Nini's parents' eyes were red and swollen. But they couldn't give up on Nini, even if there was only a glimmer of hope.
4, I believe that the future will be better
Some netizens advised them to have another child, But Nini's disease is caused by genetic incompatibility, and there is still a 25% chance of having a second child at risk of suffering from the same disease as Nini, and they do not have the courage to see another life to continue to live such a life.
Some netizens also said that Nini is beautiful, and Nini can be a children's clothing model. This can also reduce some of the burden, Nini's parents have also responded, Nini can not understand any instructions, can not laugh, can not cooperate with the photo.
Rare diseases mean indefinite treatment with no hope in sight, even for the wealthiest. Besides, Nini's family is just an ordinary rural family. In the past few years, he has been rehabilitated in major hospitals, and his family has long been destitute.
In order to treat Nini's illness, Nini's father found a job in Hefei to polish glass in high altitudes, a dangerous job but a high salary, earning 300 yuan a day. At first, Nini's mother, fearing something wrong, would not allow her husband to go. But only in this way, he said, can we make more money to see Nini, and Nini can recover earlier.
In the summer, the sun is blazing and scorching, and people are hanging on the outer glass of tens of meters high. In order to avoid going to the toilet in the middle of the way, it is generally deliberate to avoid drinking water when working. Working for hours on a hot day, when you get indoors, people are almost dehydrated.
But no matter how hard it is, as long as it can make Nini better, everything is worth it.
Today, Nini has just passed her 6th birthday. On the social platform, it has also received the attention of millions of fans, and netizens who like Nini will also send some beautiful clothes to Nini and cheer her up in the comment area.
Although Nini can't speak yet, she can't take care of herself in life. But with the care and companionship of her parents, Nini has made significant progress.
The gaze has changed from being sluggish and unfocused before, and gradually there will be occasional eye contact with parents. Even just a momentary glance at their parents is enough to bring them to tears. Emotions are also richer than before, stimulated by the outside world, feel pain, and cry. He even learned to use a spoon, and when he met a favorite bear doll, he would run over and take his hand.
Once also took the initiative to kiss her father, seeing this scene, Nini's mother did not hold back any longer, burst into tears, and several years of hard work and hard work were not in vain.
These are things that ordinary children can easily do, but Nini and her parents have worked hard for six years. But as long as you watch Nini slowly improve a little bit, it is worth it for this family.
Caring for a child with a rare disease is like a practice. It takes a thousand times more patience and energy than taking care of an ordinary child. As long as the child is awake, as a parent, you must always keep your attention on the child. Because you don't know what will happen to him in the next second.
Although Nini is different from ordinary children, her parents still do their best to give her a happy life.
As everyone has blessed, she is not nothing, just a little later than us, and everything will be fine.