When Zhang Zhiyi, like every new mother, was immersed in the happiness of the arrival of a new life, the child's abnormal yellow skin staining broke this ordinary beauty. After experiencing the constant pull of hope and despair, the child was eventually diagnosed with Alajerry syndrome. The single mother decided to face the reality, hold up a piece of the sky for the child, help other children with Alajeri syndrome grow up together, and let the society hear the voice of the alacheri syndrome patients: we are rare, but not weak.
01
Not long after leaving the hospital after giving birth, the child's abnormal state took us back to the hospital. At first, I thought it was ordinary neonatal jaundice, but the yellowing treatment did not work, the jaundice index soared, and I watched the three-month-old child go from a relatively normal state to a skin that obviously turned orange.
After finding that there was no possibility of yellowing in ordinary medical treatment, I went to surgery according to the doctor's recommendation and hurriedly arranged the operation. Ten minutes after the operation, the doctor came out and said: "The child has opened his abdomen, suspected that the hepatic biliary tract is atresia, and found that no intervention can be done." "I asked the doctor, so what happens next?" The doctor just said, take the baby back.
When my child was only three months old, I completely woke up from the joy of being a mother and fell into a confused and collapsed overwhelm.
Soon after, at the suggestion of a patient, I flew to Wuhan with my four-month-old child in my arms. According to Professor Fang's treatment plan, the child began to take Usfer, and the jaundice was visible to the naked eye. But the cause of the child's illness has not been determined, and I am still torn between hope and despair.
The endless treatment and waiting, the constant disagreements with the father of the child, and the bad news one after another gradually sucked away my strength. I stood on the roof of Wuhan Hospital with my child in my arms, and even had the idea of not living anymore.
Magically, looking at a small deciduous tooth that suddenly appeared in the child, I realized that during the months of tossing and turning to see a doctor, the child has been growing quietly and diligently. When the child looked at me with innocent eyes, I knew that I could not give up on him, that he was such a beautiful and expectant life.
02
When the child is more than one year old, the child is genetically screened and eventually diagnosed with Alajéri syndrome. At that time, I knew very little about Alajri syndrome, and I found not many cases that were even available on the Internet. Many children are misdiagnosed as biliary atresia in the early stages, and many parents of children experience confusion and despair like me because they cannot find the real cause of their children's illness.
Moreover, in the process of treating my child, I found that there was no one around to communicate with. When I returned to work after maternity leave, I was reluctant to talk to anyone about my children. A child often brings joy to parents, and I am not such a lucky mother. When I hear colleagues talking about children, they often can't suppress their feelings and get up alone to wipe their tears from the pantry.
So, I gradually came up with the idea that I could not fight alone. I want to find parents of children in similar situations to support and help each other. Fortunately, my nobleman, Professor Wang, who treated the child, gave me several hand-copied pieces of information that recorded the contact information of families with the same disease as me. I contacted them by phone one by one. Some children are mild diseases, and after taking Usfour for a period of time, they are basically cured; some children have serious symptoms and need to change their liver; some children, like my children, have not completely faded yellow, temporarily maintaining conservative treatment in internal medicine. Eventually I found four or five people who were in a similar situation to mine and all of whom had the desire to communicate, so in 2011, we discussed setting up a QQ group. Later, Professor Wang met the family members of the patients with Alajéri syndrome and would ask them to join the group. Over time, our community has grown and now has hundreds of people in the group.
Alagille syndrome community group
03
As the leader of the group, the development of the group goes with the flow, so that people who need to talk and communicate slowly meet us. All I do is try to understand the disease, take good care of my child, and provide some help to other parents based on my own experience.
Almost everyone who enters the group starts out in a desperate, nearly collapsed mental state. Too many of my friends started out as helpless, panicked, and crying, and many times I took on the role of a counselor, listening to one new group of friends recounting their situations, so much so that for a while I was mildly depressed by being exposed to too many negative emotions. Later, I also tried to self-regulate and persuaded other parents to cheer up: "The children are so young, we are their heavens, the only thing we can do is to ensure that we can't collapse ourselves first!" ”
Later, as my understanding of Alajerry syndrome deepened, I would also help them to simply analyze the child's condition and give advice within my knowledge. I have also contacted pharmaceutical companies on behalf of my friends to help you buy commonly used drugs more preferentially and conveniently. I also went to the Rare Disease Forum, wrote letters to the leaders in charge of rare diseases in Shanghai to explain the situation of the alageli syndrome patient group, also ran to the Social Security Bureau to inquire about the social security problems of the Alajeri syndrome group, and organized fundraising for Professor Wang's related topics in the group.
2019.8.22 Participated in the club activities of Fudan Pediatrics
In the process of managing and operating the community group, I also gained a lot of friendship and trust. Even if we have never met in real life, they are willing to talk to me and communicate with me. At an exchange meeting for a child with liver disease, a parent from Northeast China came to Shanghai to see me for the first time, hugged me and cried, and at that moment I really felt my little persistence, soothing and warming the hearts of others.
2018.5.13Some group friends gathered in Shanghai
Mother's Day is here, and I want to say to the mothers of children with Alajeri that the fight against Alajeri syndrome is a long-term process. To take care of children with this chronic disease, the effort and energy that parents have to pay is huge. You have worked hard, you must be kind to yourself, the road is still very long, we must take care of ourselves.
04
Go ahead, my dear child
My child is now fifteen years old, in his third year of junior high school. His jaundice is not completely normal and requires years of taking Usver. His physical development was much worse than that of children his age, but he had been developing and growing slowly.
I let the child know from a very young age that he had a disease, but at the same time I told him that everyone has a disease, but some people's diseases cannot be seen. Now he is as normal as other children in school, socializing, and has many friends, which I am very pleased with. However, teenage children face more difficulties and trade-offs in life, and as a single mother, what I can do is already very limited. I just hope that he can move forward relatively happily, happily, independently, and live his own unique wonderful.
Dear child, at this point, I am actually very grateful for your presence. You let me know that the world is diverse, with towering trees and lovely shrubs. Thank you for being with me and shaping me in your way.
Your arrival is a major turning point in my life, and I may not be able to have a peaceful and smooth life. But what I have gained is a new understanding of myself, the exploration of my own potential, and in the more than ten years that you have accompanied me, my understanding of life and destiny has been qualitatively different.
Zhang Zhiyi and the child's group photo
If I can make a wish on Mother's Day, I hope that my children and I will also accompany and support each other in the days to come, and become stronger selves to explore the infinite possibilities of our own lives. At the same time, I hope that in the future, thanks to our unremitting efforts, the society can give us more support. I also hope that what we do today will help people with Aladgeri syndrome to better integrate into society and provide more experience and reference for future patients.
As if the choice of fate, I met this journey unexpectedly on the road of life, and gradually became a mission, and I will continue to do it with everyone. Together, let's see more and more clearly the real situation of the survival and development of rare disease patients in today's society.
Life is a hard journey, and there must be a scenery that belongs to Arajri along the road.