OSAKA – Tsurumi Children’s Hospice opened its doors in the city of Osaka in April to provide young people with serious medical conditions and disabilities a place to play and spend quality time with their families outside their homes.
Unlike a typical palliative care institution for the terminally ill, the Tsurumi hospice caters to children with special needs who are often prevented from playing outdoors with friends over fears of infection or because of their restricted mobility.
Such a facility is rare in Japan, where around 200,000 children aged 15 or younger are estimated to have cancer or other serious illnesses.
No doctors are to be seen, but nurses, physical therapists, child care workers and volunteers including teachers and students are present — all wearing plain clothes to give the impression that this is an extension of everyday life, according to hospice officials.
“We immediately applied for admission as soon as we learned of the opening,” said Toyokiyo Morita, the 39-year-old father of Sora, 8, who has cerebral palsy caused by birth asphyxia.
Sora constantly needs equipment to monitor his heartbeat and blood oxygen levels because he stops breathing. He also relies on a stretcher when traveling.
At the hospice, staff tucked Sora into a bed suspended from the ceiling, rocked it gently and talked to the boy. After observing her son’s stable heartbeat on a monitor, his 44-year-old mother, Kayoko, said: “There are many things we can’t do at home. I’m sure he is enjoying his happiest moments.”
Built in a corner of the vast park that housed the 1990 International Garden and Greenery Exposition, the two-story hospice has a warm interior design with lots of wood. It also has large windows and a courtyard.
There are some 20 rooms with space for children to run around, a music room, a rest area for taking naps and a family bathroom.
“Playing with friends or taking a break outside their homes is a humble dream for sick children and their families,” said the hospice director, Aya Mizutani, 48.
Creating a place for children to spend time together and for families in similar situations to share their feelings also helps them feel less alienated, Mizutani says.
Access to the facility and its services is free of charge for day visits because the annual running costs, around ¥60 million ($576,000), are paid for by corporate and individual donations. In the future, the hospice looks to offer accommodations for overnight and longer stays.
Inspired by Britain’s Helen & Douglas House, the world’s first hospice for children, opened in 1982, the Tsurumi hospice is run by the Children’s Hospice Project, a charity program set up by doctors at Osaka City General Hospital and other people.
Its construction on a plot of around 2,000 sq. meters was financed by Uniqlo and the nonprofit Nippon Foundation.
The hospice officials say they aimed at building a second home for children, rather than a hospital.
The Moritas, from Kusatsu in neighboring Shiga Prefecture, say it has been difficult to go on family outings because of the limited battery capacity of Sora’s vital-signs monitor. Even when able to go, they have occasionally been denied entrance to shops.
“We don’t need to worry about the battery and we can seek help from a nurse nearby if anything happens,” Kayoko said of the hospice. “It’s an outing but we can spend time as if we were at home and we can also get to know friends who are in similar circumstances.”