医療的ケア児の姉妹を支える両親が取り組む”あいのカタチ”建設「娘たちがしっかりと地域で生きていける”居場所”をつくる！」施設は4月末に完成予定

These sisters, who live in Sapporo, are medically dependent children who require daily care. Their parents are currently building a facility accessible to people with disabilities, like these sisters, which is due for completion soon. With a slightly mobile left hand—"Sea Turtle Drawing" Wins Silver Prize More than 1,400 drawings by children were displayed in the JR Sapporo Station concourse in March. A sea turtle swimming leisurely. The children applied multiple layers of crayon and carefully drew lines with sharpened disposable chopsticks. "Congratulations to Miku Unjo, winner of the silver prize in the upper elementary school division" (organizers). The sea turtle drawing won the silver prize in the upper elementary school division. Miku Unjo (11), a fifth-grade elementary school student in Sapporo, chose the colors and finished the drawing with her slightly mobile left hand. "That's great, congratulations!" (Mother, Yoshie Unjo) "What color should we paint this? This color? This color? He never said 'yes' even once. When I asked him if he wasn't going to paint it, he said 'no,' so by not painting it, we were able to express the feeling of light coming in from above." (Miki's teacher, Sakuta Yukiyo) Sisters who require daily care Miki's older sister is 16-year-old Ayu. Both suffer from a genetic disorder called Vici syndrome, making them medically dependent children who require daily care. Miki's parents wake up about twice a night to care for them, but medical staff come during the day. "We'll pump air into the back of the baby." (Medical staff) Vici syndrome has only been reported in about 10 cases in Japan, and no effective treatment has yet been found. Her younger sister, Ria, is 5 years old. She goes to nursery school. "What time is big sister going to be on TV?" I always find myself touching my beloved big sister's body. The youngest of four sisters is Rirai (3). Tonight's dinner is hamburger steak and grilled salmon. However, Miku and Ayu won't be able to eat it like this. Her father, Masahiro, and her mother, Kae, always make the same food into a paste so that the two can eat it. The two receive their nutrition through a gastrostomy, which involves drilling a hole in their stomach and feeding food directly into their stomach. "For these children, it's like being a mother, and one of my parenting skills is to blend the home-cooked meals the whole family makes and inject them into the blender," says Kae. Masahiro and Kae have been planning something for four years. Four Years of Planning: A Place for Children Requiring Medical Care The plan is to build a short-stay facility in Ishikari City where children requiring medical care can stay. "Our goal is for our daughters to be able to live comfortably in the community," says Masahiro. "We started this project in 2017 because there was no place for our daughters to go," says Yoshie. The facility will be named "Aino Katachi" (Shape of Love). It will also include a clinic that is open to the public, and will be accessible to both children with and without disabilities. Completion is scheduled for the end of April. "This is my second daughter," says Yoshie. In January 2025, an event introducing the facility was held in Sapporo. Goods made by Miku were also sold at the venue. "Thank you. I'm so happy." (Kae) Sister Ayu's First "Lecture" While Miku continues to draw pictures and create merchandise, her sister Ayu has been asked to give a lecture. This is Ayu's first lecture. "There are many days when I wish my daughter hadn't had such a severe disability, that her illness was caused by my genetic disorder. I think about it every day. Even now, there are days when I wake up in a dream and Ayu says, 'Mom, I'm fine now, I'm cured.' But I've never once thought about or hated my daughter. I have no regrets about raising her. But I wish she didn't have these disabilities or illnesses, and I want everyone to know that there are times when I can't accept my disability or illness. But I want everyone to know that I truly love my daughter." (Kae) Finally, a letter written by Ayu was read. "To everyone who came, let's meet again. My parents are working hard, so please take care of them," (read by the emcee). "My parents are working hard..." This was Aiyu's first lecture, and she was able to share what she has always been thinking. A single, large tear sparkled in Aiyu's eye.