◇ Message from Hisato Tagawa (Director, Yokohama Children’s Hospice Project)
The meaning of Haruka’s life
It was in early summer, 1997. My younger daughter, Haruka, had just turned six and was enjoying going to a nearby kindergarten when she started to complain of a headache every morning. Strangely, the headache seemed to subside when she was up during the day. We visited a paediatrician but the cold medicines she was prescribed with did not solve the problem. We visited another paediatrician, who also reassured us that it was nothing serious. Time went by without us having any means of finding out the cause of her headaches.
One day, when summer was nearly over, I noticed that Haruka was dragging her right foot as she walked. We immediately took her to a General Hospital, where the doctor gave us the instructions for an MRI. “An incurable tumour in the brain stem. She has about six months to live.” That was the diagnosis, and our lives changed forever.
“What you should do is to enjoy your time as a family.” The doctor’s advice sounded cold to my ears, as if there was nothing to be done except to give up.
Five months later, my daughter passed away. 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 was not taking children’s feelings (needs) into consideration.
The turning point of my life came about 5 years after the death of my daughter. There were many issues to be addressed so I decided to set up a non-profit organization “Smile of Kids” with my friends. We established a short-term accommodation facility near a Children’s General Hospital for families attending to hospitalized children, where we also opened a nursery school to support the siblings. We also organized musical concerts to entertain children and families living with life-limiting or life-threatening conditions (LLTC). Through these activities, “Smile of Kids” continues to provide support to cover what is lacking in the medical field.
We have come a long way. However, when I think of the precious final months spent with my daughter and the importance of ensuring a rich and fulfilling life for children with LLTC, I feel that there is still much to be improved in the area of children’s palliative care in Japan.
“Yokohama Children’s Hospice Project” has been established as a separate non-profit organization, aiming to establish a children’s hospice, a British-born facility that is now spreading worldwide, in order to address the need of the children with short life-expectancy. It is not a place of resignation but a “home” for those children and families, a place of comfort, rest, and above all, fun and enjoyment. I believe that making that happen here in Yokohama, would indeed be, the meaning of Haruka’s life. We hope you will join us to realize this endeavor.
Director, Yokohama Children’s Hospice Project
◇ Issues surrounding Children’s Palliative Care in Japan
- In Japan, there are approximately 20,000 children with incurable LLTC such as paediatric cancer, genetic, neurological, or metabolic diseases.
- Today, we live in a world where continuous progress is being made in terms of medical technology. However, there is a shortage of supportive system for children with LLTC, who can no longer be saved by medical means.
- Severely handicapped children who can obtain the disability certificate can benefit from the welfare system, but children with paediatric cancer, genetic, neurological, and metabolic diseases etc. are often unable to obtain the much-needed non-medical support. The families caring for the child at home must bear a heavy burden.
- Even if they are sick, children do not stop to grow and develop. A children’s hospice is a facility that allows children with LLTC to play, laugh and enjoy life to the full. However, there is only one free-standing children’s hospice in Japan (Osaka).
The first children’s hospice was opened in England in 1982 and is now increasing in numbers around the world.
In Japan, there are hardly any.
Yokohama Children’s Hospice Project is working to:
* Establish the first Children’s Hospice in Kanto area.
* Act as a catalyst to spread children’s hospices across the country.
* Ensure QOL and happy memories for the children with LLTC and the family who are living in anxiety, through partnership with various sectors, including the administration, education, welfare, business, and the local community.
◇ What is a Children’s Hospice?
The Children’s Hospice we aim to establish is not a place for terminal care, but a place where children with LLTC and the family can have fun.
It is a home, not a medical institution.
Members of the staff and volunteers are there as friends, to play, study, and provide continuous support according to the needs of each child and the family, during the illness and even after the child has passed away.
It is a facility to provide community-based paediatric palliative care and support, without depending on the national system.
Philosophy of Children’s Hospice
◇ History・・・and the future
|Sept. 1997||Younger daughter of Hisato Tagawa (Haruka) was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG)|
|Feb. 1998||Haruka’s departure (age 6)
Her death brought Hisato Tagawa to reflect upon the meaning of Haruka’s life.
|Aug. 2003||A non-profit organization “Smile of Kids” was established by Hisato Tagawa and his friends, with an aim to support paediatric medical institutions and organizations to improve the QOL for children in hospitals and to develop a social system to alleviate the burden of the families caring for sick children.|
|Jun. 2008||“House of Lila” was opened by Smile of Kids. It is a short-term accommodation facility for families of patients at Kanagawa Children’s Medical Center. The land was provided by Kanagawa Prefecture (free of charge) and the construction cost was covered by donations.|
A bequest from a former nurse (Ms Yoshie Ishikawa) led to the launch of the “Committee for the Preparation of a Children’s Hospice”
The Committee started to negotiate for a lease of a land with Yokohama City Government and to raise fund for the construction cost (initial goal being 300 million yen).
|Jul. 2017||The Committee was discharged.
Yokohama Children’s Hospice Project was launched as a non-profit organization to focus on land negotiation, fundraising, awareness-raising campaigns, and paediatric palliative care trainings, in preparation for the opening of the children’s hospice.
|Dec.2018||Currently, the amount required, including the construction cost, equipment and the initial running cost, is estimated to be 360 million yen. The budget for the running cost is approximately 50 million yen/year. Fundraising activities continues to be extremely important.|
|2021 (target date)||Opening of the Children’s Hospice|