Jingwei is a child who needs to be healed once every two or three months. This rare knife-shaped blood has changed the lives of Taiwanese father John and American mother Yingli, but it also allows the couple to see more love in this world. I believe...
Jingwei is a child who needs to be healed once every two or three months. This rare knife-shaped blood has changed the lives of Taiwanese father John and American mother Yingli, but it also allows the couple to see more love in this world.
I believe that every father and mother are the same. When they are pregnant, every pregnancy test is trembling and walking on thin ice. Every time the doctor says "no problem", it feels like he has passed something, and he feels relieved. But John and his American wife Yingli Wanwan didn't expect that they were obviously a healthy child (Ji Wei) and had no cold before the age of one year. They had to go to a ceremony before the first three months of the year of extinction, and had diarrhea and had a fever of 39℃. I thought it was just a small cold, but unexpectedly this was the beginning of a long-term war.
When the doctor couldn't tell you why, ……
I also remember that on the day of the dysfunction of the dysfunction of the dysfunction of the dysfunction of the dysfunction of the dysfunction of the dysfunction, John and his wife took the stomach medicine briefly and went to the dysfunction of the dysfunction. But this child who would forget even if he had something to play, even if he had a minor illness or pain, cried endlessly during those three days and two nights, and even resisted his father's comfort and hug. It was as different as before, and he was healthy and happy ……
After returning to the flat ground, they immediately took Kanwei for emergency treatment. After drawing blood, they found that the blood redox was only more than 4 points (between six months to two years old, if the hemoglobin is less than 11g/dl, or the blood volume is less than 33%, it should be further evaluated)! The doctor also started to get nervous, but the examination could not find the reason, so he had to wait until the blood was drained and the Qiwei returned to his vitality, and then went home to inspect.
For the next eight months, Kowloon was like a rabbit wearing a battery, but after he had brought his energy to his death, he would become a sick child. John said: "Every two months, his health will slowly decline. At first, he will have symptoms such as jaundice, diarrhea, and fever. His physical strength will become worse, and he often cries and wants to sleep. Especially at that time, he was only over one year old and I don't know how to express it. The doctor couldn't find a reason, and our mother even thought that she was a child. Being possessed! My mother also burned the talisman water, took her to the hospital to bathe the child, and took her clothes to the bathroom to enjoy the fragrance. "
It was not until later that my wife took Xiaowei back to the United States and the same situation appeared again. After the Asian doctor in the United States did the electrophoresis judgment, she found that he was a mixed blood of the knife-shaped and Mediterranean. "Taiwanese probation is a bloody man in the Mediterranean, but my wife is a black American and has a gene for a bloody man in the knife type. There are few such cases in Asia."
It turned out that the child cried and pointed at the quarantine, which was a pain in the quarantine and internal pain. Because the blood-in-cutting cells of the knife type are prone to clogging the hairy blood vessels and causing local hypoxia, it is easy to cause limb stasis and internal pain. John said unwillingly, "And it hurts, it's really painful."
Knife-shaped blood cannot be found yet, so Qiwei only had to be healed once every two or three months, so he could live. Every time I took the sword to drain my blood and squeezed it, the child would still cry and would sit there obediently for two or three hours to recover. Which father can bear to look at the child and have to live a life of two or three months of blood?
In order to delay the next time of blood rebirth, John and his child lived cautiously: "We must do two things. First, the child should not get sick as much as possible, otherwise the blood erythropoiesis will suddenly fall off quickly; second, it is necessary to maintain a balanced diet and maintain a healthy diet."
In order to take him to the hospital when he was in a state of affairs, his wife gave up the original high-paying job and took care of the child wholeheartedly. In addition to the economic pressure of the whole family, the wife also has a life of self-achieving. Although I am willing to do anything for my child, my inner frustration is difficult to avoid.
"Mom loves children, of course she has a lot of worry. My wife has done a lot of work for Kanwei, and she is very dedicated to everything. But she is not a woman of family-oriented. Work achievements are her source of confidence. So during the time she was having children in the United States, she had a lot of self-doubt. We can't avoid quarrels, and we both said the habit of divorce……"
When treating children, the two have different opinions: "Because I hope the child will not live a bloody life, I will become bone marrow transplant. But even the bone marrow from my father has only a 50% chance of success. My wife hopes to use diet or natural treatment to make the child feel better. Often when the pressure is at its greatest, she will be reluctant to say: You don't have to worry about us, we will think of a way." Taking care of the pressure of the disease makes both of them confused about the future.
However, John also smiled bitterly: divorce is just a habit, because if you want to increase the chance of successful bone marrow transplantation, the best way is to transplant the bone marrow of brothers and sisters. Therefore, despite crying, loving, or quarrel, the two people who love their children should focus on the life of their children, hold the hope of trying to become a husband and wife.
"Because our children are mixed-race, it makes it even more difficult to find bone marrow transplants. Moreover, we didn't think of leaving blood at first, so the best choice for bone marrow transplants is brothers and sisters. If the match is possible after gene testing, there is hope!"
As of now, they have taken eggs three times, each time spent 70,000 or 80,000, but there are no embryos that can be implanted. This makes the two people who run the competition (because the child has the lowest repulsion when he is five or six years old) feel very stressed.. But John said happily that Taiwan still has a trial management road. If he is in the United States, he would never dare to think about it! Because it’s very expensive to be a test-manager in the United States!
Fortunately, I found a patient and empathetic doctorRecalling the stuttering of seeking medical care all the way, John said that there are too many people to thank.
"Last September, we found General Rong, Dr. Xuru. She was unable to solve the problem of the knife-shaped blood, but she was very happy to communicate. For example, if we used medical education to discuss with her, the doctor would go back and read it carefully, and then read it next time, and answer it with us. Her mind was also very open and willing to follow Let's try and find a way together."
It's not easy to meet such an empathetic doctor. My wife once met a doctor in the United States, "I have to see many patients every day, and it's impossible to take care of your children without any time." Although it's true, it's a heartbreaking answer to the parents of the sick children.
And the doctor often spends one or two clocks discussing with them, and doesn't care even if they miss lunch time. After the efforts and suggestions of the doctor, John now does not have to wait until his child is sick before he is ready to heal. He can observe whether the child's spleen is enlarged and prepare in advance.
There is love in the world, and 70 people are willing to go to long-term bloodFor children like Kazumi who need long-term blood
, if the blood type of blood is different every time, the body will produce more and more anti-body. If it is the same source of blood, it can reduce the phenomenon of body repulsion.
Once, John was in the Tianmu community, asking if anyone was willing to continue to rush to death. If this person is willing to do it, he still has to go through the journey to the tribute and do two tests, and then he still has to run the quota every six months to get a total blood. But unexpectedly, in just one ceremony, nearly one hundred private messages were asked! Finally, there were seventy people who actually went to do the inspection.
John, who is usually the most troubled person, is very moved by the helping hand to these kind-hearted people. He said, "I will shoot a record in the future, and these people will be listed in the thank you list at the end of the credits."
At the end of last year, John began to think about filming. The initial idea was simple and just wanted to be regarded as a family record.
He remembered the beautiful scenery that caught the eyes of the snow-capped mountains in high school, climbed to the top of the mountain, and looked down. Now, he also wants to let his children see this view. During the filming process, he also watched many recordings of foreign rare families with foreign rare diseases with his wife, so he had an idea: to use this recording to cheer each other up with the rare diseases with his rare diseases. "Climbing a mountain with your child, when he can't walk, I will rush him. At the same time, I will encourage him: I must work hard, but I will accompany you to climb to the top. This journey of climbing to the top, stopping and stopping, laughing and cheering each other up, just like the medical path we took, right!"
Along the way, it takes a lot of persistence. John said, "My wife will cheer up when she sees Javi's smile and thinks she can continue. On the contrary, whenever he falls asleep, I will stare at him blankly, thinking how can I let go of such a cute guy?"
He was planning to film a record, and thought: Javi, can you see the good scenery I saw along the way? This strong love becomes a belief. John said, "He will be fine, I will snatch it down."
Hearing this, our noses were also sore. I wish the miracle would happen. In the near future, Kanwei will be able to successfully transplant bone marrow and become a child who does not need to heal and can keep jumping around!
