About AO – 1 year old, needs a heart transplant

Message from representative and parents

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. 

When I met with them to hear about their situation, I was told that the only way for Aoi to live is to have a heart transplant.  Furthermore, 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.   

For this reason, 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 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.  Aoi had undergone four open-heart surgeries since she was born, and living on VAD (Ventricular Assist Device) and a pacemaker while she waits for a new heart.  She is also taking tremendous amount of medicine to avoid fatal stroke from potential blood clots and infection.  A parent is required to stay at the hospital every day for Aoi’s 24 -hour medical care.  

Aoi is staying strong and trying to live each day.  For an overseas transplant, Japanese public insurance would not cover her medical cost, travel cost including medical charter flight, living cost for the waiting period, hospitalization, and rehabilitation period.  The total cost for these transportation and treatment will exceed 3 million US dollars and is far beyond what an average family can cover.  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. 

Message from 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.  

When Aoi was born in October 2021, she had two heart surgeries and was discharged from the hospital.  However, she had to be hospitalized again after signs of serious heart failure.  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. 

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 currently has a VAD (Ventricular Assist Device) and a pacemaker as a temporarily solution until she receives a new heart.  With the two devices, she is now able to eat, cry, and even laugh loudly.  However, she is always at risk of having a fatal stroke and infection with a VAD.  Her left lung is also at risk from the pressure of the pacemaker. 

The cases of children’s heart transplants in Japan are very rare.  With many people’s support including our doctors, we have received the admission letter from New York Presbyterian Hospital-Columbia. However, tremendous amount of medical and travel expense is necessary (such as a charter medical flight) as medical cost in the USA will be outside of Japanese medical insurance.  We are more than grateful if we could receive kind help for this big decision.  

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.