About Aoi
(*Please watch the video with sound on to hear conversation of Aoi’s family)
Aoi was born on 31st October 2021 in Toshima ward, Tokyo.
The next day the doctor found a heart murmur and she was diagnosed with congenital heart disease. When Aoi was two months old (January 2022), she had congenital heart disease repair surgery and a pacemaker implantation. However, she failed to recover and Aoi is now diagnosed with “Serious heart failure after congenital heart disease repair”. It is a life-threatening disease that the weakening of the pumping function of the heart gets in the way of circulating blood throughout the body.
Unfortunately, doctors could not see improvement from 24-hour infusion therapy at ICU, and we were told the only cure would be to have a heart transplant.
Aoi currently has a VAD (Ventricular Assist Device) and a pacemaker as a temporarily solution until she receives a new heart.
There are many risks wearing a VAD. For example, one of the risks is fatal stroke from potential blood clots in the VAD. To prevent blood clots, Aoi takes “blood-thinning” medicine (anticoagulant medicines), which can actually cause bleeding in the brain. Another risk is infection from the two tubes of VAD connecting in to her body.
Considering these conditions, she urgently needs a heart transplant.
The only way for Aoi to live is to have a heart transplant.
Although the only way for Aoi to live is to have a heart transplant, due to rare cases of children’s heart transplants in Japan, there is a high possibility Aoi would not make it due to a long wait to receive a new heart. In the last ten years, on average only two heart transplants per year have taken place for children under 6 years old in Japan.
In consideration of hard work by Aoi’s doctors from Saitama Medical University International Medical Center, the Columbia University Medical Center (CUMC) in New York City has recently accepted our request. Unfortunately, the heart transplant in the United States must be paid for privately without any support from insurance companies or public medical aid. Since she is connected to the VAD, Aoi must be transported to CUMC from Japan by a special purpose airplane.We have established a voluntary Association to save Aoi in August 2022 as the total cost for these transportation and treatment will exceed 3 million US dollars and is far beyond what an average family can cover.
Therefore, we decided to start the charity to save Aoi and are gathering donations. Our fundraising goal is 530 million Japanese Yen.
Aoi’s thoughts
Either my mom or dad stays with me at the hospital, but I cannot see my sister. It’s from Covid-19 restrictions on visitors. I miss my family but I am trying to be strong and brave every day at the hospital. Daily disinfection of the stomach where VAD is connected and multiple blood collections throughout the week are examples of the painful routines I go through.
I am also working hard on rehabilitation to regain strength as my muscles have weakened during the stay in ICU.
As I’m connected to the heart pumping machine, I cannot explore the world outside my hospital bed. Everything I see is from books or internet.
When I get well, I want to play in the park and go grocery shopping. I want to take a bath with my family. I want to see and feel the changing of the seasons, touch the rain, and see the beautiful sunset. I will not give up hope for these dreams to come true.
Message from Aoi’s parents
“I have a little sister. Her name is Aoi, and we are all waiting for her to come home from the hospital.”
Our 1-year-old daughter Aoi had undergone four open-heart surgeries since she was born, and currently relies on an external heart support system called Ventricular Assist Device (VAD) and pacemaker to live.
With visiting restrictions due to COVID-19, we have limited time to see Aoi. Her thin arms are covered by bruises from multiple infusions. Yet she expresses her will to live by smiling back at us. What else is there but to protect her life? We want to show her the world outside of the hospital bed, and what it’s like to be free from painful treatment. Most importantly, we want to show her the life with her family and friends, to live and laugh with each other.
Aoi’s sister is always telling everyone about Aoi, hoping for Aoi to come back home soon. We are hoping as a family to see the growth of Aoi by her side. We want to capture moments like her first steps, first words, cheeky moves, and every little growth that awaits her.
We understand we are asking a lot, but it would be deeply appreciated if you could give a thought and help us to save Aoi’s life. Thank you so much.
Message from representative
We have established a voluntary Association to save Aoi who was born with a serious heart failure. The members of this support group share the determination of helping Aoi and her family eventually be able to live their normal, happy life together as one family.
Aoi’s father and I used to work together at a same company. Not only we had a great relationship as colleagues but we are great friends as well. I also know his family very well.
Moments after I heard the happy news of their second child Aoi, I was told she required a heart surgery due to a heart failure.
I was very worried. Aoi struggled to improve after her heart surgery and I could not watch how disappointed and devastated her parents were.
I was told that they made a big decision to have an overseas heart transplant and begged for my help.
Without hesitation, I replied yes to support them.
Aoi is staying strong and trying to live each day.
We continuously appreciate kind thoughts and messages but your monetary donation is more than appreciated. Thank you for thinking of Aoi and your strong support.
Representative
Kyosuke Kunichika
Fundraising Goal and Breakdown of Expenses
Donations received from everyone will be carefully used as per below for Aoi’s medical expenses to have the heart transplant in the United States. We fully realize that this is a big request to ask and a tremendous amount, but we would appreciate your kind support and help.
| Deposit(2.5 million dollars) *1 | 370 Million JPY |
| Tax for medical surcharge in NY | 36 Million JPY |
| Travel Expenses*2 | 81 Million JPY |
| Living Expenses in US | 9 Million JPY |
| Administrative Expenses | 2 Million JPY |
| Medical contingency fee | 32 Million JPY |
| Total | 530 Million JPY (approx. $3,580,000) |
*1 At a rate of 148 yen per US dollar.
*2 Travel expenses includes fee for chartered plane, air tickets, ambulance etc.
Website and social media
★Website：https://ao-sukuukai.jp/
★Twitter：https://twitter.com/ao_sukuukai
★Facebook：https://www.facebook.com/save.aochan/
★Instagram：https://www.instagram.com/ao_sukuukai/
★Youtube：https://www.youtube.com/channel/UC1TOpyb_ZCz3zAU18J3JJpg/featured
Matters that require attention
Receipt is available via email upon request. Please let us know at the time of your donation.
Receipt will be sent after the 20th of the following month of donation.
