Message from parents

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

Constitution of Save Mako-chan Project

Article 1 (Name)

The main event is called "Save Mako-chan Association".

Article 2 (Office)

The main office of the association is located at 1-36-3 Higashinakano, Nakano Ward, Tokyo, at Fukasawa Building 202.
Subcommittee offices (branches) of the Association may be established as needed.
All offices will be abolished after fundraising.

Article 3 (Purpose)

It is a non-profit organization that aims to support the realization of lung transplantation in the United States by Ms. Mako Tamura (hereinafter referred to as Mako-chan) and returning to Japan. The association also plans its activities to raise the expenses needed for it through donations from those who agrees to its purpose and activities.

Article 4 (Contents of Activities)

The Association will carry out the following activities to achieve the purpose of the preceding article.
(1) Raise funds for medical expenses for lung transplant, as well as fundraising for expenses required for travel and stay
(2) In order to widely disseminate the above fundraising activities, appropriate public relations activities and disclosure of fundraising status
(3) maintenance and operation duties
(4) Other activities required to achieve the purpose

Article 5 (Period of activity)

As for fundraising, if the target amount is reached, fundraising will be stopped immediately. In addition, after achieving the purpose or receiving an audit by the auditor when it is no longer necessary, the Association shall terminate its activities with financial reports and be dissolved.

Article 6 (Members and Dues)

Consisting of volunteers of individuals or groups who can agree with and support the activities of the association.
The main body does not collect admission fee and fee.

Article 7 (Organization system)

The following officers have been assigned to the association to organize and manage the association.
Representative, Deputy, Accounting, IT, Public Relations, Secretary
Officers will be supplemented and added as needed.
Volunteer advisors can be placed as observers.

Article 8 (Reward)

Officers of the association cannot receive compensation.
Officers can reimburse for the cost of executing their duties.

Article 9 (administration)

The association will be governed by the rules of the association. The Steering Committee shall be held in response to the convening of a representative, and shall be established with the attendance of a majority of the officers shown above, and a resolution shall be established with a majority of the attendees.
However, Mako-chan's family and volunteer advisors can attend the Steering Committee.

Article 10 (Accounting)

The accounting of the Association will be placed at the secretariat, and deposits and withdrawals of the operation expenses of the association will be executed based on the procedures decided by the Steering Committee, and will be periodically disclosed and published on the website etc.

Article 11 (disposal of residual property)

Prior to the suspension and dissolution of the association, if a surplus is generated, the period can be determined in consultation with the doctor and the surplus can be frozen.
After the freeze period has passed, donate to other patient support organizations and organizations that require other travel transplants.
Disposal results must be published on the website including after the freezing period (if you close the website, specify the means of publication in advance).

Article 12 (establishment of the association)

This association is established on December 4, 2018

Article 13 (Annex)

This Constitution shall take effect on December 4, 2018.
These regulations shall be decided by the board of directors in case of need of revision.
We revise a part of these constitutions and take effect on February 18, 2018.