My daughter was diagnosed with congenital biliary atresia when she was three months old and underwent a Kasai procedure (hepatoportoenterostomy) at the local Niigata University Medical & Dental Hospital. The surgery was performed successfully, but her liver became fibrotic and she continued to be at risk of developing cirrhosis. She underwent blood tests and liver function tests monthly and was repeatedly hospitalized and released every time she developed a fever.

In the autumn of my daughter’s second year, she developed esophageal varices and underwent another surgery. As she began developing a variety of symptoms due to her liver function, we decided to have her undergo a live donor liver transplant procedure in consideration of the further burden to her body. However, there are only a few cases of live donor liver transplant procedures being carried out in Niigata, and therefore we were referred to the Jichi Medical University Hospital in Tochigi Prefecture and went to discuss our daughter’s situation with the doctor there.

We first discussed various topics including the status of our daughter’s body, as well as the details, costs, and timeframe of the procedure. We were full of overwhelming concerns about having a live donor liver transplant procedure at a distant hospital. In this discussion, one of our concerns was where we would stay. That was how we first heard about the “Ronald McDonald House” and how we, and later our daughter, ended up staying at this facility that we were never even aware of until then.

In terms of our impression of the House, I remember that we all said that “it’s like a hotel!!!” I found it to be a very reassuring facility that allows you to cook your own meals and provides plenty of space for interacting with others. We stayed at the House several times before the procedure – my daughter seemed to like the House very much and looked forward more to going to the House than going to the hospital.

Normally, making regular doctor’s visits to a distant hospital often involves also finding accommodations and meals. In contrast, the “1,000 yen per person per night” cost and “self-catering” elements offered by the House were very helpful to us. It was also very encouraging to interact with the other House guests while cooking our own meals. Being able to talk with other guests as we shared the food we had prepared was indescribably reassuring and allowed me to feel that “it’s not only my child who is going through this”. I would no doubt have been worried both financially and mentally if we were not able to stay at the House.

My daughter successfully underwent her live donor liver transplant procedure in the summer of her third year. I very much appreciated the fact that everyone at the House was genuinely happy to hear that the procedure had ended successfully.

I used to sometimes wonder why it seemed that only my daughter was ill. Now, my way of thinking has changed completely, and it is all due to my daughter. The fact that I was able to interact with other children who have serious illnesses and their guardians; the fact that I was able to interact with people with the same illness; the fact that I was able to travel to Tochigi Prefecture (even though the purpose was to visit the hospital), and learned about the “Ronald McDonald House”, and was able to interact with families who had similar surgeries scheduled, and had the opportunity to talk with people from all over Japan who are fighting serious illnesses, and was cheered up by the volunteers and people at the House… I can think about all of this with more gratitude.

My daughter is currently is in her second year at elementary school and goes to school full of energy. We stay at the House about once every half a year, and whenever we stay, we collect lots of PET plastic bottle caps in the effort to provide assistance in any small way. There are many things that even we can do. We will continue to stay at the House in the future – thank you.

Toshiki Terasaki