[Editor's Note] They changed their lives because they suffered from rare diseases. They tried to live and think like ordinary people. On the road to fighting against illness, each of them shone with extraordinary light. Around the world, there are more than 7,000 known rare disea

[Editor's Note]

changed their life because they suffered from the rare disease of . They tried to live and think like ordinary people. On the road to fighting against illness, each of them shone with extraordinary light.

There are more than 7,000 known rare diseases worldwide, and there are about 20 million rare diseases in my country. For a long time, some rare disease groups lack social attention, and the expensive treatments or lack effective treatment methods have put their survival in difficulties.

Care for patients with rare diseases, and the continuous attention and efforts of all parties are still needed. The Paper will continue to launch a series of reports on "Rare Life" and continue to pay attention to the rare disease groups in China, hoping to add a lot of attention and hope to them.

has been sick for more than ten years and has basically spent it in a wheelchair. It is becoming increasingly difficult to speak, and there are only a few fingers that can move... Despite this, Lai Min, a 36-year-old rare disease patient, still feels that her life has been full over the years, "and she has not lost everything because of illness."

Lai Min's mother suffers from hereditary cerebellar ataxia (also known as penguin disease), a rare disease that makes hereditary unsteady after onset, has difficulty speaking, and is hereditary. At the age of 23, Lai Min found that she would shake when she stood up, and she quickly realized that she had been "chosen".

unfortunately followed one after another. Within 10 days, as the only daughter, she lost both parents. Her father died of car accident, and then her mother died of illness. Later, her boyfriend, who had been dating for 7 years, broke up with her. "My parents didn't know I was sick until they died." The lonely Lai Min closed himself up and lived alone in a dilapidated rental house in Nanning, Guangxi. That period of time was the darkest moment in her life.

By chance, Lai Min and elementary school classmate Ding Yizhou got in touch on QQ, and the two quickly sparked love. Afterwards, Lai Min moved back to his hometown with Ding Yizhou and lived in Liuzhou, ushering in a new life.

Lai Min likes sanmao and yearns for the distance. In 2015, she and her boyfriend started an "adventure": a bicycle pulling a wheelchair and a dog, traveling around China together. In more than three years, they have traveled to most of China. This special trip made them popular on the Internet.

During their trip, they held a wedding, opened an inn, and gave birth to a healthy daughter. "My daughter makes me feel that my life has continued." Lai Min told The Paper (www.thepaper.cn) that the happiest moment now is that every afternoon, my husband carried her downstairs and went to the kindergarten gate to pick her up home.

Relying on typing one or two hundred words a day, Lai Min completed the book recording her life experience with the help of her husband. When she got the sample book, she was a little excited and said to Ding Yizhou, "Husband, I am paralyzed, but it's not useless. I can also make money to support my family."

In mid-September this year, Lai Min began to sign new books online, titled "The World is Beautiful, We Are Good".

In mid-September, after the new book was published, Lai Min signed it online. Respondent Photo provided by

"This matter has been found"

1986 Lai Min is an only child and grew up in an ordinary family in Liunan District, Liuzhou City, Guangxi. After graduating from college, she worked as a tour guide in Guilin, with a stable income and a stable relationship.

unfortunately happened in 2009. At first, Lai Min found that she would shake when she stood up and lose her balance. She quickly guessed that she had the same disease as her mother.

Lai Min's mother suffers from hereditary cerebellar ataxia. Because the patient walks like a penguin, it is also called "penguin disease". Public information shows that hereditary cerebellar ataxia is caused by degenerative atrophy of the patient's cerebellum, brainstem and spinal cord due to lesions. The incidence rate is 5/100,000-8/100,000, which is a rare disease. In addition to walking, patients will also experience symptoms such as unclear speech, choking and coughing when drinking water, double vision, and dysphagia in , and the symptoms will gradually worsen over time. Studies have shown that most patients with penguin disease are hereditary and usually have familial onset. The main inheritance method, , is autosomal dominant.

Because her mother is ill, Lai Min has known about penguin disease since she was a child.She said that her mother fell ill in her 30s and then divorced her father. She lived alone and lived alone, which made it difficult. "You have to rely on the help of your neighbors to buy vegetables."

At first, Lai Min couldn't accept it for the time being. She didn't dare to go to the hospital or tell her parents. But unfortunately, she came to her house again. It was also in 2009 that her father died in a car accident. Nine days later, her mother died of illness. Lai Min said that until her parents died, they didn't know that she was sick. After

was unable to be competent for the tour guide, Lai Min went to Nanning to do telemarketing, with a monthly salary of 800 yuan. In Nanning, Lai Min was diagnosed with penguin disease and her boyfriend, who had been dating for 7 years, broke up with her. Her life was tough, and she rented a dilapidated staircase with a dog. Lai Min felt desperate and didn't know where the way out.

Ding Yizhou recalled that in 2013, after attending a class reunion, he joined the class QQ group. One day in March 2014, he saw Lai Min sending a message on QQ space : "If one day, I die, what will you do? If you don't have my smile, what will you do? If you don't have my company, what will you do? If you miss me, what will you do?" He was shocked and hurried to ask Lai Min what was going on.

Ding Yizhou is Lai Min's elementary school classmate, and the two had completely different lives before. Ding Yizhou admitted that he has been a naughty and troublesome "bad student" since he was a child. He has poor grades and loves to fight. He is a "little bully" that his peers dare not mess with. When he was in his first year of high school, he dropped out of school due to a broken heart. Later, he worked as a waiter, salesman and other jobs, and also mistakenly entered a pyramid scheme. Before re-meeting Lai Min, he worked as a barber in Liuzhou for ten years.

When I was in elementary school, Lai Min and Ding Yizhou lived at the same table. Ding Yizhou discovered that Lai Min did not dislike him, could see his good side and was willing to play with him. After junior high school, the two had no contact again.

After chatting on QQ for a month, Ding Yizhou decided to go to Nanning to meet Lai Min. Before leaving, he said to Lai Min, "I will come again." A few months later, the two decided to be together, and Lai Min returned to Liuzhou to live with Ding Yizhou.

Lai Min and Ding Yizhou. Except for the signature, all the pictures in this article are Pengpai News reporter Chen Xuhou. Photo

Ding Yizhou told Pengpai News that he had talked about many relationships and had an indulgent life. These experiences made him understand what kind of person he wanted to find. "Her (Lai Min)'s simplicity and sincerity attracted me, and I don't need to over-package myself, and I get along very comfortably."

Because he is engaged in the hairdressing industry, Ding Yizhou has seen too many exquisitely dressed women, but he doesn't like this. Lai Min does not wear makeup or wear high heels, which are all advantages in his eyes.

Lai Min took a fancy to Ding Yizhou's character, "I think he is very reliable, keeps his words in mind, cares about my affairs."

Lai Min's mentality is very optimistic in recent years. She always remembers that the high school chemistry teacher once encouraged students to say, "It's great, this matter has been found by me." After she became ill, she had her own understanding of this sentence, "There is light in this world and there is darkness. If I don't bear this, there will be others to bear it."

"Let's go"

Ding Yizhou took out his savings and treated Lai Min, but the results were very little. Gradually, he and Lai Min realized the reality and no longer attached to treatment.

Lai Min likes Sanmao very much, and she has basically read Sanmao’s books. " Rainy Season No More " let her understand the story of Sanmao since she was a child, and "The Story of the Sahara" let her see the love between Sanmao and Jose . The world under Sanmao's pen makes her look forward to traveling and the distance.

One day, Lai Min suddenly said to Ding Yizhou, "Let's go!" Ding Yizhou didn't understand and asked what "Let's go" means. Lai Min said, "We set out from Liuzhou and go wherever we want."

Previously, Ding Yizhou had no idea about travel, but in order to fulfill Lai Min's wish, he decided to take Lai Min on a trip.

In January 2015, Lai Min and Ding Yizhou set off from Liuzhou and started a journey around China. This was a difficult trip. Ding Yizhou was riding a bicycle and pulling Lai Min in a wheelchair, followed by the dog "Abao" that Lai Min had been raising for many years. They walked for 15 days from Liuzhou to Nanning for more than 200 kilometers. At that time, their financial situation was in a difficult situation and they only brought 200 yuan. On the way, Ding Yizhou cuts people's hair, sets up street stalls, and earns travel expenses.

They became popular shortly after they set out. On the way, someone took their photos, the media followed them, and their stories were widely circulated. Someone gave them a dog named "Aji", and from then on they had two dogs to accompany them. Someone sponsored an electric tricycle to make their travel more convenient.

In July 2015, they arrived in Lhasa, Tibet. In front of the Potala Palace , Ding Yizhou held the Gesang flower in his hand and proposed to Lai Min. In April 2016, they arrived in Litang, Sichuan, and locals held their wedding. Ding Yizhou said that every day is different during the journey, and this feeling is fascinating, so they go further and further.

Lai Min and Ding Yizhou travel in Lhasa. Photo provided by the interviewee

This trip lasted for more than three years. Their footprints were spread across most of China, with the entire itinerary of about 40,000 kilometers. Lai Min said that he did not continue traveling later because "I have been to all the places I want to go."

The couple has their own opinions on the meaning of travel. Lai Min said that this trip confirmed her previous view of the world, "there are helplessness and joy." Ding Yizhou said, "If you don't go out, life is fixed. You can see different scenery when you go out, and you will understand that there are many possibilities in life and there are many different ways to live."

"Life has continued"

In January 2017, Lai Min got pregnant.

Lai Min's wish has always been Lai Min. Considering Lai Min's health, Ding Yizhou disagreed and wanted to abort the child. Finally, the couple reached a consensus: if the child is healthy, he will be born.

Unfortunately, subsequent examinations showed that the fetus carries a hereditary pathogenic gene. Helplessly, Lai Min induced labor.

In the second half of 2018, Lai Min and her husband returned to Litang and planned to settle here. Lai Min doesn't like too noisy and bustling places. Litang before the fire was an ideal place for her to live in her heart. Ding Yizhou said that Litang retains a strong traditional culture of Kangba and the locals are very enthusiastic.

became popular on the Internet and changed their life trajectory.

They have appeared on dozens of TV programs including CCTV's " Reader ". Their story has been adapted into a TV series with a copyright fee of 500,000 yuan. Using this 500,000 yuan, they opened an inn in Litang and started a new life. After the inn opened, the business was good and I could make a living. In 2019, Lai Min became pregnant again. "No child thinks there is something missing in the family."

Fortunately, after examination, the child was healthy and was born smoothly. Lai Min said that after giving birth to her daughter, her health became significantly worse, "the spirit is not as good as before, and the speech is more difficult." But she was happy when she saw her daughter, felt energetic, and "life has continued."

Due to the impact of the epidemic, the inn was closed due to no business. After this year's Spring Festival, Lai Min, Ding Yizhou and his daughter returned to Liuzhou to live. In September, Lai Min's daughter went to kindergarten.

"I didn't dare to think that I could be a mother even if I was." Lai Min tried his best to be a qualified mother. She doesn't like the noise of the city, but she also believes that for the sake of the education of her children, they should stay in the city. The most anticipated moment of the day was at 4:30 pm, when her husband would carry her downstairs, then push her to the kindergarten door, and pick up his daughter home together.

On the way to pick up her daughter home, Lai Min sat in a wheelchair and walked on the edge of the road. Her daughter walked on the sidewalk, keeping a distance of two or three meters from her. Along the way, Lai Min's head would always be sideways to his daughter and watch her every move.

Lai Min, her husband and mother-in-law, took her daughter home.

Lai Min was very guilty and sad because she could not be a normal mother. Once, the daughter shouted in the bed, "Mom, get up! Get up!" No matter how hard Lai Min tried, she couldn't get up. When she recalled this scene, she could not control her emotions and tears couldn't stop flowing.

"Return to the Internet after paying off the debt"

Lai Min wants to communicate with people, but she has already struggled to speak. It took a lot of effort to spit out a few words, and almost every sentence she said had to pause. Her breathing was not smooth either, " is not breathing ".Her husband often said a lot of words, but she couldn't interfere, which made her feel powerless.

Lai Min lost her ability to walk and also sat in a wheelchair at home. Her husband needed to help her dress, go to the toilet, take a bath, etc. She had only a few fingers that could move, but she relied on these fingers to eat, brush her phone, write on her tablet, etc.

Currently, Lai Min and her husband live in a staircase room in Liuzhou. She couldn't walk, so she had to rely on her husband's back downstairs.

"The day is quite fulfilling and you won't feel bored." Lai Min said that in her spare time, she likes to watch short videos, especially cooking videos, "because she likes cooking."

Ding Yizhou told The Paper that Lai Min has a good mentality and considering the degree of her condition, she has been well controlled.

Every day, Ding Yizhou would take Lai Min to broadcast live online, and their live broadcast room would sell local specialties from Liuzhou. Ding Yizhou said that as early internet celebrities, their couple had traffic, but they resisted becoming internet celebrities, "don't want to travel for the sake of shooting", and did not like the noise on the Internet. They did not monetize traffic in the past. Now, since the inn has invested more than 2 million yuan in advance and after, they have basically lost all of them. They owe more than one million yuan in debt, and at this stage they have to use the Internet to make money to pay off their debts.

Lai Min and Ding Yizhou also noticed that some netizens questioned their relationship, believing that this is not love, but exchange of interests; some people think that they are making a show and using disabled people to sell misery. Some people even think that they should not have children, and that is irresponsible to the children... Once, Lai Min was angry and cried when she saw a netizen's aggressive message.

"We don't want to be an internet celebrity, but we are pushed to become an internet celebrity. After paying off the debt, we will get out of the Internet." Ding Yizhou said that the story between him and Lai Min is not a childhood sweetheart, a prince and a princess, nor a pure love story that can last for thousands of years. The two of them usually quarrel, "Don't say that we are so perfect."

In order to get rid of housework, Ding Yizhou hired an aunt to be responsible for cooking and cleaning. Ding Yizhou said that at present, their family’s monthly expenses are tens of thousands of yuan, and traffic revenue, live streaming and other products can be "barely balanced".

Since 2016, Lai Min has started writing, recording her love story and travel story with her husband. "Writing one or two hundred words a day." Lai Min said that the reason she insisted on writing was because she could not do other jobs and could only write by making money.

Lai Min typing is very slow and can only write one or two hundred words a day.

In mid-September this year, Lai Min's new book "The World is Beautiful, We Are Good" was officially published. In the book, Lai Min records the story of her and Ding Yizhou reunion and love and traveling together, and also writes about the daily relationship between the couple. When I got the sample book, Lai Min told Ding Yizhou, "Husband, I am paralyzed, but it's not useless. I can also make money to support my family."

As Lai Min and her husband become popular on the Internet, Penguin disease has also attracted public attention. Ding Yizhou told The Paper that they have been paid attention to by the outside world for a long time. In addition to their love stories and travel stories, another important reason is that Lai Min is a patient with rare diseases. Over the years, a large number of patients with rare diseases have paid attention to their couples, and they have also become representatives of this special group. This gives them a sense of mission, they will live with an optimistic attitude, and hope that other patients with rare diseases and their families can face it optimistically.