Thank you all so much for your help and support to save our Tamaki.
I still remember the very special day when she was born.
She was given life with her twin sister on a cold day in Sapporo, the first snowing day of the season in November 12, 2013.
We named her older twin sister Sumire.
Sumire was born with umbilical cord tied around her neck.
After ICU and GCU operations, she was able to come home on February 2014.
But in the beginning of May 2014, Sumire kept having fevers, vomit problems, palms and feet coldness.
Even after attending hospitals over and over, the doctor only told us she only has a cold and to see if it heals naturally. After 5 days of her visit to the hospital in June 30th 2014, she suddenly passed away.
It was due to a sudden heart failure.
Not even having the time to tear down in sorrow, we received blood results from Tamaki, the younger sister’s last visit from the hospital few days after Sumire’s death.
She had a symptom of Dilated Cardiomyopathy.
It is a disease where the heart muscle begins to dilate, meaning it stretches and becomes thinner. Consequently, the inside of the chamber enlarges. The problem often spreads to the right ventricle and then to the atria. As the heart chambers dilate, the heart muscle doesn’t contract normally and cannot pump blood very well. As the heart becomes weaker heart failure occurs.
We still do not know what affected Sumire’s sudden death, but the doctors assume it was the same disease.
We were attending a University hospital in Hokkaido, but was told that they will not be able to cure Tamaki when the worst state happens, and introduced us to a hospital in Osaka.
We all moved to Osaka right away without any hesitant.
We did not want her to suffer like her older sister, and wanted to do anything to help her.
After moving to Osaka in September 2014, due to the medicines Tamaki has been taking, she seemed to be feeling better.
The doctors told us with this type of disease, she will soon need a heart transplant, but we believed she would cure with the surgeries she was taking.
But we were only able to keep that hope for a short period of time.
Due to her asthma problem, it triggered her symptoms to worsen in August 2015.
She became not able to breath on her own.
She survived due to ICU operation and the use of ventilator.
But from this point on, her heart started to weaken.
In November 2015, her heart rhythm broke down. The symptom was called “complete atrioventricular block”.
Her right side of her body became numb the next month.
She is now taking warfarin to prevent her blood to clog, but this medicine has a high risk of causing brain hemorrhage.
Our only chance now to save Tamaki is to transplant a new heart for her.
But in reality, even though it became legal for youth to become a donor after 2010 in Japan, the chances of finding a donor for a child age 6 or younger is very low. There were only 3 heart donors within 5 years in the research in January 2016.
They told us the chances are very low to find one in Japan.
Our doctor introduced us to a children hospital in Seattle, Washington. They will be able to transplant a heart to Tamaki if found.
But the price for heart transplant in the US is very expensive, and our family will not be able to afford it on our own.
That is why we have to ask people around the world for help.
We cannot give up on our dear daughter’s life. She lives today because of her sister’s sacrifice.
It is very selfish for me to ask people who I’ve never met for help, but please allow me to beg you to give our daughter a chance to live.
We beg for your warm support and help.
2016/03/14
Ryuma and Natsuko Aoyama