Mako-chan is a 16 year old high school student with many dreams. She is forced in her bed due to a rare disease called pulmonary arterial hypertension. The only way for her to survive is to receive a double lung transplant in the U.S., but it needs substantial funds. We do want to help her and her family and make her dream realize. To that end, we have decided to start fund-raising for her.
We deeply appreciate your understanding and warm support.
Save Mako Project
In the US, additional examinations may be required, and Mako may have to wait for the transplant surgery at ICU.
During the fundraising, we may increase the target amount or carry out additional fundraising activities.
|Deposit||$ 1.5 million ＊1 165 million yen|
|Reserved fund||5 million yen＊2|
|Living expenses in the U.S.||8 million yen＊3|
|Travel expenses||5 million yen ＊4|
|Administration expenses||3 million yen|
Mako spends most of the time in the hospital after spring
Before I decided to transplant overseas, I had struggled not just with my physical conditions but also in my conscience if this was the right thing to do. Today I cannot go to school because I can even hardly go to the portable restroom from the shortness of breath and palpitation. I spend most of my day in bed.
So when my doctor recommended me to consider going overseas for a double lung transplant, I said I would definitely consider it. However, as time went on, I came to think whether I should be going through this. It takes a lot of money and many people's support to carry out this very difficult operation in a foreign country. I was very worried if I deserved to ask for your help or how I can reciprocate in return for your good intentions.
When I shared my worries with the doctor in charge, he said to me in tears that “you endured so much since you started fighting this illness and you deserve a chance to survive. I’d want you to spend a normal life as a high school student just as anyone else.” Along with the doctor, my mother's friend said, "I will support you whatever you decide." Many other people gave me words of support. As I saw people who encouraged me, I began to think maybe it’s ok to ask I wanted to get well and live a normal life.
With a successful transplant, I can do many things I wanted to do. I want to go to school like everyone else, want to run around, want to go to many places on a bicycle, want to go to a university, want to chat with everyone at cultural festivals and sports days, want to cook a lot, I want to eat delicious food I want, I want to play competitive card games, I want to play sports, and I want to do a lot.
I also have a dream for the future. I want to work on making anime. I have had a lot of hardships since I found this disease. Around that time, I found anime. When I was watching anime, I forgot the hardships. I felt like anime encouraged me to try harder. It made me think that I need to take it easy even when I was struggling physically and mentally as I could not move freely and felt ill.
I found that there are many things that can be uncovered by stepping away from my current problems. If you keep thinking it is painful and feeling sorry for myself, you can never find a solution. If my heart gets dark and I can't do anything.
So I want to create a refuge for those who are fighting and struggling with animes that I create. I want to give them energy and give them hope. I want to save the heart of a person like me. It may be a selfish request, but I’d like to give my special thank you if you can consider giving me your support to achieve my dream.
I’d like to express our deepest appreciation for all people who took the time, some of whom despite their physical conditions, coming from distant places to launch “Save Mako-chan” Association and to those who provided support from early on. Thank you very much for your support and cooperation. Mako was born in December, 2002. When Mako was in the third grade at elementary school, I found out that I, mother, had an incurable disease called idiopathic pulmonary arterial hypertension.
After that, I found it to be a hereditary disease but that Mako could not be tested until she was 20 years old, I’ve asked her teachers to look for any sign of the same disease in her such as pale face in physical education time or if her breath was short. I also indicated that I had pulmonary arterial hypertension on the medical questionnaire for an annual medical checkup every time Mako advanced a grade so they can examine her with caution.
In May when Mako was in the first year at her junior high school, she received a notification to retest electrocardiogram for the first time, and we went to the health center and received reexamination. I was relieved to hear that the result was fine on the spot. But just in case, I asked "I have hereditary idiopathic pulmonary arterial hypertension but my daughter is all right?" Immediately they ran an echocardiographic examination and said "Oh, hers look the same as you." I could not stop crying. I asked that question, hoping to hear that we had nothing to worry about, so I would be more confident that she didn’t have what I had. I apologized to my daughter "I'm sorry I gave you my disease". My daughter immediately returned words, "It's not your fault, mom. You can’t help it."
I called my doctor at Kyorin University Hospital right after. Mako was 12 years old and the hospital did not specialize in pediatric care but they agreed to examine her. One week after the re-examination at the health center that revealed the onset, Mako was admitted to Kyorin University Hospital and received a lot of tests. After the diagnosis became official, we started treatment with oral medicine immediately while Mako was still admitted at the hospital, but there was not much effect. She started a 24 hour constant injection from the beginning of August.
During that time, a junior high school teacher and a school nurse came to the hospital, and they heard about her medical condition directly from the doctor in charge. They planned to make arrangements so that Mako could return to school from the second semester. They planned to install a simple elevator to the 4th floor where her classes were held, until it was ready, she started to study at the nurse’s office on the first floor.
After the completion ceremony of the first year at the junior high school, Mako was in the hospital for an examination. Suddenly a high fever started and the oxygen level has dropped. So she was immediately transferred to ICU. A test was run to find out the cause, and it revealed that the blood loss from the lungs was caused by a rapid decrease of platelets as a side effect of her medication. We were told to expect the worst if the bleeding did not go away.
The doctor exchanged opinions with the professors of university hospitals in western Japan as well as ones in Kanto, and adopted the best treatment.
Although Mako could not make the school year opening ceremony, she was discharged miraculously. She would check platelets and hemoglobin at a local core hospital by taking a blood sample once a week and emailed the results every week to Professor Sato for instructions.
When Mako was in the second year of junior high school, her condition became relatively stable and she only needed to be admitted for exams during long school holidays.
When Mako was in the third year of junior high school, she was doing so well she was able to join a school trip to Kyoto in May though she was using a wheelchair to be easy on her body and had to take some separate itineraries. A different medicine that is less likely to cause side effects was working, but in June, the platelets dropped again. Therefore, the amount of medicine had to be reduced. At the time of discharge, Mako had to rely on oxygen tanks for 24 hours. After the summer school holiday, Mako became wheelchair bound and could hardly go out. Hospitalization has also increased. Mako took advantage of online classes under the circumstances, and she tried hard to study for high school entrance exams. She was able to pass and accepted into a public high school.
Before the entrance ceremony, we met with teachers many times at the high school she was accepted into so that she was able to participate in the ceremony. Also they made an arrangement for us to be able to park up to her classroom. Because I am too weak due to the same illness, teachers in turn come to us and transferred her into the wheelchair and into her classroom. Mako was doing ok in spring, but in early June, there was a sharp drop in platelets. She also started to see frequent heart failures. Now Mako is mostly in the hospital.
About two years ago, unfortunately we were told the only way for Mako to survive is a transplant and we registered her for a domestic transplant. However, the results of the catheter test she received in June and August this year are still at a standstill, getting worse and worse, and we were told we would lose her while waiting for the Japanese transplant order. We were very frustrated and lost as a family. Our family struggled over our next steps. We thought over and over again whether it would be worthwhile to receive a transplant abroad. But at the end, we decided that we want her to receive a double lung transplant abroad while she still has her physical strength, while her success rate would be high.
There are many things Mako wants to do as well. She also has a dream.
I was able to work for more than 10 years. I was able to do many fun things with my friends because the onset of the disease happened relatively late in my life. I was able to marry and have a family, too. Now I'm getting sicker every day, and I have side effects from my medicine and it is painful, but I have a lot of pleasant memories when I look back.
But Mako’s life has been a continuous cycle of patience and battle with the disease while she should have been enjoying her favorite club activities, make friends, and enjoy her junior high and high school life.
When Mako was first diagnosed, medical treatment has been progressing steadily. We were hoping that a great medicine would come out in time and the cure was not a dream. But it turns out to be only a wishful thinking and unfortunately the only option left for her to survive is a transplant.
I know it is a crazy request. I think it is a selfish request. However, I cannot bear the imagination that we would lose her in our life.
Please consider giving us your warm support for Mako, who is patient and giving her 100% to fight. Could you please let me make her dream come true?
Please let Mako receive her lung transplant. We truly appreciate your favor.
Tamura Sachio & Hisako
Thank you for visiting our website. I first met Mako-chan in the waiting room of Kyorin University Hospital. At that time, her mother with the same illness had more severe symptoms than Mako-chan, who was a junior high school student. She and I talked about what she does after school, preparing meals, talking about things in school, hope for high school, etc. However, by the time Mako-chan took the high school exam, she repeatedly went through admissions and discharges, and I heard that doctors and nurses were moved by Mako-chan, seeing her study hard in her bed.
Ms. Shigetoh has been working on the preparation of this association up to this point, but she is also a patient with the same pulmonary hypertension as Mako-chan. She felt ill from fatigue and I took on the role of the representative to reduce the burden on her.
While Mako-chan decided to get a transplant, I was told that Mako-chan said "I need to get well so I can take care of my mother this time and push her wheelchair." I also was told she said "I want to help other patients in future".
We sincerely hope that the surgery will be successful and Mako will be able to live a normal high school life. And I hope that she can support the heart of those who will follow.
There are many severe patients and people affected by disasters and hardships. It may sound selfish to ask for a donation for only one person, but I would like to ask for your support and cooperation for Mako-chan's life.
Meeting that saves Mako
Representative Hiroko Shimada