YAMAGATA – Director Hidetaka Inazuka, known for his documentary on the double atomic-bomb survivor, has completed a new film on three Japanese children fighting a very rare and little-known disease that has left them mostly immobile since birth.
The film, titled “Kiseki no Kodomotachi” (“Miracle Children”), features three children, two of whom are brother and sister, who suffer from aromatic L-amino acid decarboxylase deficiency — a genetically inherited neurological disorder caused by a lack of an enzyme related to physical mobility.
It documents about 10 years of the children’s life, from when they were very young, bed-ridden and unable to speak, to more recent times in which they have shown dramatic improvement as gene-repair therapy has allowed them some mobility with the help of a walker.
“I hope the film will cheer up patients with a similar disease,” says Inazuka, who plans to release the film across Japan this fall.
Inazuka began filming the children after he learned in 2006 that one of them, a boy from Tokyo who happened to be his acquaintance’s child, was diagnosed with the illness, also known as AADC deficiency. The boy, then 10 years old, had been told he was suffering from brain paralysis.
“As the disorder is extremely rare, it is difficult to even get a correct diagnosis,” Inazuka says. “I thought I would make the film to, first of all, let people know about the existence of such an illness.”
After learning about the brother and sister who suffer from the disorder, Inazuka visited them in their Yamagata Prefecture home more than 30 times over the past decade.
The documentary depicts the patients’ daily lives with their families and doctors as well as with people supporting them like teachers and nurses at their schools for handicapped children.
“I feel like I am their uncle nowadays,” Inazuka says.
According to a website set up to promote the film, the children received gene-repair brain surgery in 2015 that led to a dramatic improvement in their condition. They can now sit up and show clearer facial expressions.
“I hope people recognize the potential of this medical development,” Inazuka says.
As of January 2017, there were less than 100 cases of AADC deficiency reported worldwide, including six in Japan, according to the website.
Inazuka, 66, became known internationally in 2011 after the release of his documentary film on a Japanese man who survived both the 1945 U.S. atomic bombings of Hiroshima and Nagasaki at the end of World War II.
After a British television program ridiculed the man as “the unluckiest man in the world,” before apologizing, Inazuka’s film was screened in the country.
Inazuka’s films have aimed to show the plight of people in difficult situations and their extraordinary fight to overcome.
“The reality of suffering cannot be conveyed without making the effort to tell the story,” he says.