The Ocean and Sky Children’s Hospice in Yokohama, Japan Hisato Tagawa, Representative Director, Yokohama Children’s Hospice Project and Vice-President Japan Brain Tumor Alliance
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apan is known as one of the countries with the highest medical technologies and a remarkably low perinatal mortality rate. But in the shadow of this bright reputation, there are approximately 20,000 children living with seriously life-threatening conditions (LTCs), such as childhood cancer, genetic, metabolic, or neurological diseases, who lack the necessary total care of the mind, body and the spirit that they need. All children have the right to enjoy life to the fullest, regardless of their health condition. They grow, develop, and nurture dreams through playing, studying, experimenting, and interacting with other people. But children with serious illnesses who are often repeatedly hospitalized cannot have the same experiences that healthy children enjoy as a matter of course. These children and their families can become socially isolated, spending
whole family has not kept pace compared to other countries. That is why Yokohama Children’s Hospice Project decided to take up the mission to advocate for the creation of a children’s hospice, a place for children with serious illnesses and their families, where the time spent will be a shining memory forever.
The beginning
Mr Hisato Tagawa, father of Haruka, and a driving force behind The Ocean and Sky Children’s Hospice in Yokohama, Japan
most of their time either in a hospital or within their homes. Children’s palliative care and the support system, which focus on the quality of life of the child and the
It was in early summer, 1997. My younger daughter, Haruka, had just turned six when she started to complain of a headache every morning. Soon, I noticed that she was dragging her right leg as she walked. My wife and I immediately took her to a general hospital, where we were given a shocking diagnosis. The doctor told us that: “Your daughter has an incurable brain tumour, DIPG [diffuse intrinsic pontine glioma]. She has about six months to live.”
Five months later, my daughter passed away
Young Haruka Tagawa from Japan was diagnosed with an incurable brain tumour when she was six years old
The time spent with her in the final months made me think of the meaning of her life and I came to realize that the medical care for children in those days did not take into consideration the needs of the children and their families. In 2003, my colleagues and I started up a non-profit organization to provide non-medical support for the families of hospitalized children, building a house for family accommodation, as well as providing day-care for the siblings. It was a big step forward, but we continued to feel that there was still much to be done to support the children and their ➤ Brain Tumour
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