Highlights: Rie Kikuchi was born in January of 1976 (Showa 51) She has an intractable neurological disease called "Rett syndrome" Rett syndrome is a rare disease that is said to affect only about 3,1000 people in Japan. Her mother gave her as many experiences as possible, such as excursions and overnight training, in the hope that it would lead to Rieda's growth. She still looks back on the time she spent raising her children while helping each other.

【NHK】Woman smiling on sofa at home. I loved my mother's coffee. Tracing 13 years of life from 40 photos entrusted to me by my mother ...

13 photos entrusted to me by my motherJuly 7 at 25:19

Woman smiling at family on sofa at home.
I loved the coffee my mother made for me.

Seven years ago, people suddenly lost their lives for unreasonable reasons such as "people with disabilities create unhappiness" and "they are not worth living."

My mother sent me 7 photos for the first time.
There were 13 years spent with my family.

(Ministry of Science and Culture, Reporter Hajime Oka)

The words fade away...

Rie Kikuchi.
I was born in January of 1976 (Showa 51).

According to her mother, she was an energetic girl weighing 1 grams, and her pretty face was impressive.

"Delicious", "Poke", "Tokei", "Hikoki"...
The words I had just learned gradually stopped being heard when I was one and a half years old.

At the time, her mother was expecting her to talk to her again.

However, by the time he was two years old, he stopped speaking and showed no interest in people or things.

As a result of the examination at the university hospital, it was pointed out that there was an intellectual delay, and it was diagnosed as a developmental disorder.

A collection of essays written by mothers at a parent's association of children with disabilities describes her frank feelings about not being able to accept reality.

"I'm worried about the future, and I wonder how I will be able to live alone," says Rie, when she was three years old.

"There was a joint sports day with the nursery school, and for some reason, I almost cried when I saw it. Even now, when I see and hear the actions and words of healthy children, I sometimes feel hot in my chest. I can't help but feel sad and sorry for why Rie became a disabled child."

1000,<> rare diseases in Japan

After that, he entered a school for the disabled (now Sagamihara Support School) in Sagamihara City.
He had a habit of tangling his hands under his chin and preferred to play alone rather than spend time with friends.

Unable to express his thoughts in words, he sometimes banged his head against a wall.

He began to have epileptic seizures almost every day, and he often lost consciousness suddenly, so he could not take his eyes off him.

When I was in my third year of elementary school, I was admitted to a specialized hospital and as a result of a detailed examination, I found out that I had an intractable neurological disease called "Rett syndrome."

It is a rare disease that is said to affect only about 3,1000 people in Japan, and no fundamental cure has been found even now.

Even so, her mother gave her as many experiences as possible, such as excursions and overnight training, in the hope that it would lead to Rieda's growth.

Rie loved to play outside.

In particular, when he was playing in the water, he happily gave himself up to the float and left an impression on him with a smile on his face.

With each school year, the smile gradually increased, and the mother was happy with the growth of her child.

"My eyes are much more aligned, my expression is brighter, my smile is more pronounced, my hyperactive movements have calmed down a lot, and I can watch for a while even if I let go of my hands. My emotional expression has become richer, and I have started to work on what I like, such as smiling and looking into my eyes, albeit a little."

This is Ryoko Mitsui (83), who knows Rieda's parents and children.

As a mother of a child with the same disability, what left a lasting impression on her was the hard work of Rieda's mother at the time.

She still looks back on the time she spent raising her children while helping each other, such as taking care of Rie at home and going on trips together.

Ms
. Ryoko Mitsui: "Rie-san was severely disabled, so she often didn't respond to any requests for help, but even so, her mother seemed to do everything that she thought was good for her, such as taking her as soon as she heard that rehabilitation training would have a positive effect. He acted cheerfully without showing any desperation, so I always felt that he was amazing."

Coffee and coming-of-age ceremony

As she entered high school and graduated from a school for the disabled and became an adult, she had more opportunities to think about her career path and future.

"It is also a progressive disease, and I want to be an antenna that can receive the signals that Rie is emitting to see how it will change in the future" (when Rie was in her third year of high school).

"I'm still healthy, but of course I'm getting older and my physical strength and energy will decline, but Rieda's life is about to begin. If you were able-bodied, you would fall in love, get married... However, I hope that Rie will do life training and increase what she can do, and that she will be a healthy, well-liked and loved person."

It was in this context that the coming-of-age ceremony was held.
Rie was dressed in sunny clothes in the garden of her home.

Rieda, who looks down, can't make eye contact, and doesn't often be photographed with a smile, the family's strategy was to show her favorite coffee from behind the camera.

I was able to record a big smile.

Searching for a place to be after the death of a parent

Rie needed support for everything in her life, including eating and excretion.

After graduating from the high school for the handicapped, they attend a facility called "Kaede House" where people with disabilities can receive daily care.

This is Tomoyo Takahashi, 30, who directly supported Rieda, who is in her 2s, at this facility for about two and a half years.

At that time, Rie was often smiling, and all the staff were attracted by her carefree smile.

Tomoyo Takahashi
: "For me, Rie-san was like an idol with a cute smile, and I remember very well that when I prepared coffee during breaks, she would smile and come up to me and make a face that I wanted to drink. On the other hand, there was a timing for everything she did, and when she was uncomfortable, she would make a sad face, sometimes shed tears, and since she couldn't speak, I think she would express her emotions through her actions."

Last Furlough Home

When Rie turned 36, her elderly parents decided to enter a facility for the mentally handicapped thinking about what would happen after they died.

These are the words of my mother who looked back on those days.

Every month when my daughter came home, she would smile and laugh and laugh when the car came near the house. When you enter the house, you first head to the coffee maker. I can't help but want to drink it. First drink and sit on your usual favorite sofa. I move to check the house and return to the sofa. This casual thing was a joy for my daughter and a joy for our family."

Rie used to go home temporarily every month.

On the day this photo was taken, after enjoying a meal at a local café that he frequented, he returned home and laughed with his family over nonsense.

However, this day turned out to be the last day we spent together as a family.

Half a month later, Rie was killed by a former staff member at Tsukui Yamayurien, where she was staying.

Unreasonable and discriminatory motives such as "people with disabilities create misfortune" and "they are not worth living" led to the murder of 19 residents, including Rieda.

Four years after entering the facility, Rie was 4 years old.

13 photos of Rie

Seven years have passed since then.
Takahashi, who has been in charge of Rieda, says he still can't accept that he lost his life in the incident.

Tomoyo Takahashi
: "I really enjoyed the time I shared with Rieda, and I would like to say that I strongly disagree with the discriminatory claim that people with disabilities are the ones who create unhappiness. In the same way that I try to understand Rieda's thoughts, I think Rie-san always looked at me as to what kind of person I was and whether I was a person I could trust and convey my thoughts to. Rieda-san reminds me that mutual trust is the most important thing in order to communicate, and I think we should not forget her."

19 Lives

In this case, all victims were initially anonymous.
I wanted to tell her about her life, so I have been talking to her mother and people who know Rie for the past four years.

This summer, seven years after the incident, her mother entrusted me with 4 photos of Rie for the first time, saying, "I don't want her to forget."

Mother
: "It is true that it was really difficult to raise Rieda, who has a severe disability. I think that the fact that Rie was smiling and happy made us happy."

Her mother still offers her favorite coffee every morning in front of Rieda's photo.

And he spends his time talking about nonsense like before.

Mother
: "Rieda, although she couldn't live her life to the end, I think she lived her life the way she wanted to do it. It's just a shock that Rie isn't here right now."

Hajime Oka, Reporter, Ministry of Science and CultureJoined the Bureau in 2012 Since 2021, he has been covering the medical field of psychiatry and neurology, such as dementia and intractable diseases,

at the Faculty of Science and Culture. Since his days at the Yokohama Bureau, he has been interviewing the bereaved families and other related parties.

Yamayurien Incident: Thoughts of the Bereaved Families: 13 Photos Entrusted to a Reporter for the First Time by a Mother | NHK