It has already been 9 years since my daughter had transplant. Time passes very quickly.
My daughter was diagnosed as congenital biliary atresia when she was 3 months old and she had an operation at Niigata University Medical & Dental Hospital, a local hospital.
In the fall when she was 2 years old, she had an esophageal varices and had an operation again. Then, in the summer when she was 3 years old, she had a successful operation of living-donor liver transplantation.
The Ronald McDonald House helped me in many ways. When you need to go to a hospital far from home, you have to worry about accommodation and food. Being able to stay at RMH for 1000 yen per person per day and to have an access to the kitchen was a big help for us. The communication with other familiesin the kitchen turned out to be a great psychological support, too. Talking about various things over dishes we cooked gave me a sense of security. I realized that it was not only my daughter who had to go through operations. Without RMH, it would have been difficult financially and psychologically.
There was a time when I was troubled, asking myself “Why? Why only my daughter? Why does she have to suffer from such illnesses?...”
Now, I have a totally different point of view. I now think that everything was thanks to my daughter.
I was able to exchange with children with intractable diseases and their parents.
I was able to network with families who had the same operation through Ronald McDonald House.
I had opportunities to talk with people with different intractable diseases all over Japan.
I am also truly grateful for the mental support that I received from volunteers and the member of the House.
She now is a junior-high school student from this spring, at the age of puberty. It is a difficult stage in the process of growing up. However, I am also happy to see the changes in her attitudes.
I now interact with people all over Japan to exchange information through SNS and patient advocacy groups. Thanks to my daughter, I am involved in various activities.