重い障がいある"医療的ケア児"地域で安心して暮らせるように…子どもと家族を支えたい　夜間の預かりもできる新施設開業へ

We want to support children and their parents with severe disabilities. A new facility for children requiring medical care is about to open. These are people who have taken action to ensure that children can live in peace. Ishikari City is home to Ai Kids, a day care center for children with severe physical and mental disabilities. Children with severe disabilities who require medical support, such as ventilators, spend their daytime hours here. It's an important place for them to safely wait for their working parents to return home. Yuki Kaiya, 40, is a nurse. She herself is raising a child with a severe disability. The facility is run by Solways, an NPO established primarily by mothers of children with disabilities, like Kaiya. "Because they were born with a condition, their daily lives are different. They're growing steadily, even at their own pace. They're able to do things they couldn't do before, and express things they couldn't express before, whether it's through facial expressions or movements. Even small changes really make you feel like they're growing, and working here, I can share that with the mothers and tell the staff how much they've grown. That's the best part of this job, and it's the best part," says Yuki Kaiya. Children who require 24-hour medical support are on the rise nationwide, with over 300 in Sapporo alone. The reason for this is medical advances that have made it possible to save many lives. The day care center where Kaiya and her colleagues work also picks up children from school. This is Kaiya's only daughter, Yuna. Yuna was diagnosed with Rett syndrome at the age of 18 months. Rett syndrome is an incurable disease affecting only about 1,000 people in Japan. It gradually causes patients to lose the ability to do things they were previously able to do, like eating and walking. "He used to be able to roll over, but now he can't sit up by himself. He used to play with toys but can't now. He lost facial expressions and showed signs of autism. They told me this was strange (and took him to the doctor). I wondered if I was worrying too much, and if it was my fault. That was probably the hardest time, the most difficult." (Kaiya Yuki) The turning point came seven years ago. I started working at the facility when it was first established, and met friends with whom I could share my worries. "Now that I have people I can talk to and who are willing to help me, I feel like I can do anything. I owe that feeling to the people around me. I'm so grateful." (Kaiya Yuki) Solways, the nonprofit organization that runs Kaiya's day care center, is scheduled to open a new facility in April 2025. In addition to the usual daytime services, this facility also offers overnight care (short stays). Children can spend the night safely with the staff they regularly see. There is also a pediatric department on the first floor that can be used by children with or without disabilities. A trial session of overnight care was held prior to the opening of the short stay service. Yuna will also be staying overnight away from home. This time, her mother, Kaiya, will also be watching over her as a staff member. They listen to their friends' favorite music together. They also play bingo, trying to guess each other's favorite things. This special night with friends continues to get more and more lively. "They were able to stay the night together, aren't they? It's great. They're not exactly talking, but they probably understand each other. I can tell from their expressions that they're listening to each other, making noises, and communicating in their own way. I'm seeing them in a different light than when they're just with their parents. It's not just words, is it?" (Kaiya Yuki) I hope that through these experiences, they will be able to live in the community in the future. They were able to wake up safely in the morning. Time spent away from home by children with disabilities is also important for their parents, who usually provide medical care. "The long life of caregiving is likely to be very stressful, both physically and mentally, so mental relaxation is priceless." (Unjo Yoshie, Representative Director, NPO Solways) A new facility with overnight stays is scheduled to open in April 2025. When we're together, we feel safe. When we're together, we're sure to smile.