The Campaign

The concept was to create “doable-the-first-time” sports that are the most challenging for children with congenital heart disease which their parents believe they cannot do. We worked with specialists from the Japanese Society of Pediatric Cardiology and Cardiac Surgery (JSPCCS) to ensure these sports were safe, and also received assistance from Japan’s largest patients’ association in gaining the trust of the children’s families. The project featured a “doable” sports program for children with congenital heart disease; it also gave them a chance to be away from their parents for the first time. The sports program was developed with the assistance of young adults with congenital heart disease and NPOs comprising medical professionals. We ran the sports program in a way that made it easy to do the sports, and also allay the concerns of the parents.

Creative Execution

-Since 2015, we have been creating system for children with congenital heart disease to exercise safely, in collaboration with Japan’s largest patients’ association, specialists from the JSPCCS, and entertainment-type NPOs for medical welfare. We are also planning and running the project with a 20-year old young adult patient. -From August to May 2015, we developed an enjoyable sports program for children with congenital heart disease, with assistance from a young adult patient and NPO staff with medical knowledge. -Over two years (August 2015, November 2016, September 2017), we ran enjoyable sports programs for over 100 children with congenital heart disease, and networking events and workshops for their parents. Over 100 medical and welfare staff also participated. -In March 2016, we screened a documentary showing congenital heart disease through the eyes of young adult patients, and family-related issues. Since April 2016, patients’ associations nationwide have been screening this documentary for families.

So far 500 people have taken part in our sports programs, and our documentary has been screened by Japan’s largest patients’ association with 4,500 members, and subsequently by other patients’ associations nationwide. Moreover, news and media on social issues surrounding children with congenital heart disease and their families have reached around 20 million people. A mother of a child with congenital heart disease, who has been a staunch supporter of this project, is working on launching an NPO to tackle the various issues concerning these children such as day care, and eradicating impediments to their independence.

This project has changed the perception and actions of the public and families of children with congenital heart disease. Each year in Japan, one in every 100 children are born with congenital heart disease, and 90% of the families of those children fear that the condition will further deteriorate causing them to remain indoors and isolated from society. This project encouraged those families to become more independent, and fostered a better understanding in society of children with congenital heart disease. It has become a nationwide movement driven by the belief those families have in their children’s potential.

The project was designed for parents with many concerns about their children with congenital heart disease. Normally these parents find it difficult to receive assistance from others, and they become isolated and unable to leave their children on their own. We worked with day-care center staff with medical knowledge and created an environment where parents and children felt comfortable being away from each other. We also worked with young adults with congenital heart disease and NPO staff with medical knowledge to develop a “doable” sports program for these patients, and created a documentary film based on the process. It showed what the patients understood about the disease, and how they felt about their parents. The film was shown nationwide with the cooperation of patients’ associations, and communicated how letting children with heart disease do what they can by themselves instead of overprotecting them can foster greater independence in the future.