Most people are not aware of the difficulties faced by children with life-limiting diseases, and by their families who must provide 24-hour medical care. The Nippon Foundation is engaged in a variety of activities providing both tangible and intangible support to bring smiles to these children and their families, by enabling seriously ill children to enjoy being children and offering respite for their families.
Approximately 200,000 children in Japan are highly dependent on medical care
Medical advances have made it possible to save the lives of children with diseases like cancer and congenital heart disease, which were once considered untreatable. At the same time, this has led to a sharp increase in the number of children with severe disabilities, or who require medical equipment on a daily basis after leaving the hospital. Today, the number of children in Japan who are highly dependent on medical care is estimated at around 200,000. Nevertheless, Japan is lacking in terms of services and facilities to support these children.
Medical practice in Japan today tends to rely on recuperation at home rather than long-term hospitalization for patients who have passed the acute stage and whose condition has stabilized. Seriously ill children who return home often require respirators, feeding tubes, and other medical equipment, and responsibility for their care at home is borne by their families.
Providing medical care 24 hours a day, 365 days a year, takes a heavy toll mentally, physically, and financially. Children with these illnesses are not able to enjoy the same lifestyles as other children; they cannot go to school or play outside with their friends. Furthermore, the fact that their parents must give top priority to their care also places stress on their siblings. Families providing long-term home care tend to become exhausted.
Ryuhei Tatara, head of the palliative care department at Osaka City General Hospital, studied pediatric palliative care in Britain and was an early proponent of the need for support for seriously ill children. He is involved with the TSURUMI Children’s Hospice in Osaka, a project in which The Nippon Foundation is also cooperating, and spoke about the need for a shift from a conventional medical institution-focused approach to a community-wide support framework for these children and their families.
“Japan’s medical technologies are globally first-rate, and we can now cure many seriously ill children. Nevertheless, some children cannot be cured and will not live to adulthood, or cannot be completely cured and will require continued medical care for the rest of their lives. Allowing children to enjoy the limited time they have while battling a life-limiting illness, or leading a quality life with a disability, requires specialization that is completely separate from medical technology. We are seeking to provide a time and place in which children can play naturally with their friends and forget about their illness, where their families can feel free to take a rest and leave their child in the care of others, and where the child’s health and safety are guaranteed. Medical treatment and nursing care tend to isolate these children and their families from their local communities. Creating a system in which they can live as part of their communities requires private-sector support in addition to public-sector structures.”
Enabling children to forget about their illness and smile again
The Nippon Foundation supports children with serious illnesses and their families in a variety of ways, working with highly specialized NGOs and other organizations to offer home visits by health care professionals, trips for families with seriously ill children, and camps for seriously ill children.
We have supported a summer camp program for children with diabetes, which teaches diabetic children how to manage their symptoms themselves, for more than 40 years. In 2009 we launched the Tooth Fairy project, which works with the Japan Dental Association to raise donations by recycling precious metals used for dental treatment and implants. These donations are directed primarily toward seriously ill children, delivering “dreams” to children truly in need of assistance.
Kayo Aizawa of The Nippon Foundation’s Social Innovation Department’s Social Welfare Team explains The Nippon Foundation’s activities to support children with serious illnesses.
“In the past, many activities to support seriously ill children have been in the form of “special days” for children, like day trips and special events. These activities were based on a private-sector standpoint of being important for children, and were outside the scope of what the government and social welfare services provide. We are trying to provide support that is more closely tied to the children and their families in terms of their daily lives in their communities. We plan to set up facilities that operate like daycare services, within public-sector structures. Our first objective is to train people who are able to operate these facilities.”
The Nippon Foundation also promotes networks that bring together staffs of organizations that operate children’s hospices and provide respite services, to enable them to share experiences and issues, and expand the content of their activities.
Main activities for seriously ill children
Camps for children with serious disabilities
Summer camps (Operated by Nanbyonet)
Camps are held every year at eight locations around Japan. With doctors and nurses in attendance, children who need intensive medical care like aspiration, tubal feeding, and oxygen control on a daily basis can safely participate. Children are able to have first-time experiences like swimming in the ocean or riding a horse, which they would not otherwise have a chance to do. Because this is affiliated with the Tooth Fairy project, dentists also volunteer to give the children free dental checkups.
Solaputi Kids’ Camp(Operated by Solaputi Kids’ Camp)
The Nippon Foundation helped build and supports the operation of a 16 hectare campsite in Takikawa, Hokkaido. With medical backup from doctors, nurses, and volunteers, children with serious illnesses can participate in programs to experience and enjoy nature in safety and with peace of mind. Children’s own doctors can also attend the camp with the child. The facility was partially opened in 2009, and construction was completed in 2012. Programs expose children to forests and animals in the summer, and offer snow activities in the winter.
Wish Vacation (Operated by Hope & Wish for Children with Life-Threatening Illness and Their Families (Non-Profit Organization) )
This project provides seriously ill children and their families, who cannot normally take family vacations because of mobility or financial considerations, with trips to places like Tokyo Disneyland, Asakusa in Tokyo, and Universal Studios Japan. In addition to enjoying the theme park, the trips are designed to allow families who may not have much interaction with society the chance to do everyday things like visit a hairdresser or go shopping. These programs are especially popular with siblings who must normally give priority to their brother’s or sister’s medical care, allowing them to laugh and have fun. Each trip is limited to two families, and the program is designed to accommodate 30 families annually.
Summer camp for children with diabetes (Operated by the Japan Association for Diabetes Education and Care)
This project holds camps for elementary, middle, and high school-aged children who have type 1 diabetes, which is usually diagnosed in children and young adults (previously known as juvenile diabetes). The camps are held around Japan, and last from three to seven days. Through group activities in a natural setting, children learn the information and techniques needed to manage their own symptoms, including giving themselves insulin injections and measuring their blood glucose level, while also making friends with other diabetic children. In addition to doctors, nurses, and nutritionists, the participation of high school graduates with diabetes as volunteers makes this program unique. After attending the camp, many of the children express a wish to become a nurse or nutritionist. Camps have been held since 1967, and The Nippon Foundation has supported this project for roughly 40 years.
Specialist Pediatric Cancer Facilities
Child Chemo House (Operated by the Child Chemo Support Foundation)
One side effect of cancer medications is a weakened immune system. Child Chemo House was built on Kobe’s Port Island, which is also home to several medical institutions, as Japan’s first specialist facility at which children with cancer and their families can enjoy spending time together without fear of infection.
TSURUMI Children’s Hospice (Operated by the Children’s Hospice Project)
TSURUMI Children’s Hospice is Japan’s first community-based hospice for children, modeled on the world’s first children’s hospice, Helen & Douglas House in England. In Japan, hospices are generally thought of as providing late-stage palliative care, but with a motto of “Live Deep,” TSURUMI Children’s Hospice aims to be a place where children with life-threatening conditions and their families can easily visit for short stays, and relax with peace of mind. This project is jointly supported by UNIQLO Co., Ltd., and The Nippon Foundation.
Photographs by Kei Kodera