Nobuaki Kobayashi is a phenomenally kind and dedicated man. Life has never been easy, however. Now his wife is chronically unwell and he too is feeling his age.
Not that you would ever hear this from his own lips. But the word is out.
Kobayashi is executive director of the NPO he founded in 1998: The Supporting Network for the Chronically Sick Children of Japan.
Born in Tokyo’s Harajuku area, Kobayashi can remember a time when Takeshita-dori and youth culture did not exist. For the early part of his life he was just a regular salaried worker. Then his 5-year-old son became ill.
“Daisuke had Dawson’s disease, or subacute sclerosing panencephalitis,” Kobayashi explains. “SSPE is a chronic persistent infection of the central nervous system caused by an altered form of the measles virus. It’s nearly always fatal.”
Normally, a victim of SSPE lives only one or two years. Daisuke lived for eight, dying when he was 13.
“Once he was diagnosed, we had no support from anyone. Most people have no idea how hard it is for a family with a chronically sick child to care for that child while trying to maintain a normal life. Twenty years ago, we lived in a bubble of pain and misery, isolated and alone. Society had no place for us.”
It was for this reason that Kobayashi decided to try and do something to change the situation for the better. “It was not very exciting being a salaryman anyway,” he says.
With the help of an empathetic doctor, he began by seeking out a few families in similar situations. Talking on the phone turned into counseling, and as the word spread, the media caught on. Soon Kobayashi had a core of volunteers — parents, relatives, friends, supporters and more medical specialists.
Now the network stretches from northern Kanto all the way down to Okinawa. Even though it became an officially designated NPO 10 years ago, it remains informal, with branches manned solely by volunteers, and only four full-time staff (including Kobayashi) at the headquarters in Tokyo’s Bunkyo Ward.
“Right now our network does not extend into Hokkaido, but if a critical mass of affected families did come together and ask for assistance, we would do our best to help get them organized.”
“We will celebrate our 10th anniversary in August,” he says. “However, the work goes back 20 years.”
The network’s activities are wide and varied, from seminars for teachers to better understand the needs of chronically sick children and their siblings attending school, to summer camps.
“We organize summer camps all over Japan. In one camp there might be 30 children, nearly all in wheelchairs, together with 70-80 volunteers, including parents. That’s the level of need.”
The camps depend on existing facilities, tending to be based in schools and community centers. But there are lots of outdoor activities. In the last few years, children have been given the chance to rise about the earth in a hot-air balloon — no easy task, lifting chairs into the gondola — but the looks on small faces make all the effort worthwhile.
“Activities encompass the full range of ability. Art and craft classes. Kayaking using specially designed canoes. Horse-riding. Concerts. Communing with dolphins. Scuba-diving. “We are always in touch with local hospitals. Nurses and doctors are always close at hand.”
Volunteers also organize parties. Christmas is well-established, and Kobayashi remembers volunteers from this paper acting as Santa on several occasions. The full-scale U.S.-European-style Halloween, with costumes and games, however, is a new experience for many Japanese families.
“YC&AC — the Yokohama Cricket and Athletics Club has welcomed a dozen or so of our children for the last five years or so. They can’t participate in many of the activities, but are made to feel wonderfully at home by members and their children. Often it’s the first time our children and their parents have come into contact with the foreign community. A very happy time.”
The effect of such experiences on chronically sick children (and indeed their parents and siblings) cannot be emphasized enough. (One girl in a wheelchair was so thrilled to have contact with native English speakers, that she decided her dream was to become an interpreter.)
Kobayashi also remembers a boy with multiple illnesses. He lived in a shell; his parents had great difficulty in socializing.
The first time the mother brought him to summer camp — this was in Kanagawa — the child hardly responded and she said not a word. They came in isolation, they left in isolation. Or so everyone thought. Because they came again the following year.
Although they did not get involved, this time the mother opened up, joining a discussion group. For the first time she revealed how she and her husband had thought many times of committing suicide, dying together in the bathtub.
The third year the whole family turned up, including the child’s brother. It was, Kobayashi recalls, as if all their personalities had changed: “The parents offered to become group leaders. The boy grabbed the microphone and was urging other kids to dance. It was astonishing, a miracle.”
Kobayashi’s foundation operates on subscriptions from 800 official members, ranging from families to supporters and such corporate donors as Matsushita and Shogakkan.
“We have no foreign corporate supporters right now, but we would be very happy to hear from any one willing to help, either with money or time. We know we are the tip of the iceberg. There are thousands of families all over Japan that need help. But we can only open our hands to those who make the first move.”
Japanese hospitals, he says, are way behind in terms of medical support, compared to the rest of the developed world.
“We need to train volunteers to run recreational rooms in hospitals for chronically ill children. Japanese people are bad at networking laterally; we have to swim against the tide, cut through bureaucracy, fight the regimentation that keeps parents out of wards.”
Imagine. Your child is chronically sick and you are allowed access for only two hours a day. If a hospital is flexible, you can be there all the time, trying to be supportive to a child on, say, a ventilator, but with no backup or relief. “There’s so much resistance to overcome.”
Having said this, he is admiring and appreciative of one doctor he knows at a big hospital in Kanagawa, who now has an army of volunteers and regular story times and other activities. Such progress, Kobayashi considers, “is a model for Japan.”
In a perfect world, he sees doctors, nurses, parents and local government in collaboration. But as things stand, there is little to no interest even at the local government level. “For now, we must rely on the goodwill and hard work of private citizens.”
In a perfect world, every urban landscape would be barrier free. “In Yokohama’s Naka Ward, for example, I know of only three coffee shops that are conveniently accessible to wheelchairs, where mothers might meet.”
Kobayashi asks us not to be afraid when we come across a family with a chronically sick child, but to smile and be interested. Such simple support helps improve the quality of everyone’s life.
“Such children can look alarming, but they’re not dangerous, just ill. They need your compassion, understanding and help. They’re not contagious.”
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