【進行性の難病】“筋ジストロフィー”18歳大学生のリアル 延べ30人のヘルパーが支える24時間介助の一人暮らし 「できることを探す」挑戦の日々と周囲に訪れた変化

Muscular dystrophy is a rare disease in which the muscles of the body weaken, making it difficult to move the joints of the neck, elbows, and knees as desired. The muscles that control breathing also weaken. It is a progressive disease for which no fundamental cure has been established. A man diagnosed at the age of five, who has been using a wheelchair for daily life, is now 18 years old and has begun a new challenge: university life in Sapporo. The relationship between the supporter and the supported. Through that connection, a certain realization emerged. ■Overcoming Obstacles to Enter University: "I'm Excited" - A New Life Facing a Rare Disease He overcame many obstacles to get here. In April of this year, Terumasa Wada (18), who has a severe disability, attended his university entrance ceremony. Terumasa is attending Hokkaido Information University in Ebetsu City. Terumasa Wada (18) "I'm excited because I really feel like a new life has begun." "Ulrich muscular dystrophy." It is a progressive, rare disease in which the muscles of the body gradually weaken, and motor function declines. With his university entrance, Terumasa began living alone in Sapporo. However, he cannot live without assistance. Eating, using the toilet, bathing, etc.—his joints are stiff, and he cannot freely change the direction of his neck or his posture. The start of his day heading to university. Even getting ready in the morning is not easy. Terumasa's muscle strength is such that he can barely hold an electric toothbrush. Wada Terumasa (18) "I get up at 6:45. I'm sleepy, but I can't help it... I won't make it otherwise." "Severe Home Care" and "University Study Support" are what support Terumasa. Through Sapporo City's support system, multiple caregivers take turns caring for Terumasa 24 hours a day. ■Hitting drums with his fingertips and jamming... Terumasa's driving force We began interviewing Terumasa six months ago, in January of this year. Terumasa was on stage with his middle school teacher. Because his finger joints are not severely stiff, he can move his fingertips. Terumasa was using a tablet app to produce drum sounds and participated in a session with his mentor's piano performance. Unable to move his neck, he couldn't look at his fingertips, but he could see them through the monitor. He skillfully struck the pads, delivering a passionate performance as a "drummer." Terumasa Wada (18) "There are many things I can't do, but I think the most important thing is how I can utilize my abilities within those limitations." "I want to find what I can do, not what I can't." That is Terumasa's strong driving force. ■University life aiming for future independence… with helpers in classes His commute to university is about 40 minutes each way by car. Two helpers accompany him. At university, he is studying business management and aiming for financial independence. He moves around the university campus in an electric wheelchair. During classes, he cannot turn his neck, so his helpers film the lectures on a smartphone. The video is displayed on a computer screen positioned at Terumasa's eye level. This is the first time Hokkaido Information University has accepted a student with a severe disability. Terumasa's enrollment presented significant challenges. Terumasa Wada (18): "The bed issue. I need a bed to use the toilet. I need it for changing clothes, but the size and height of the bed... first, deciding where to place it was a challenge." Terumasa's family donated a bed to the university. Three toilets are now usable. As Ulrich muscular dystrophy progresses, the muscles that control breathing also weaken. A ventilator that delivers air to the nose is essential for patients. It sounds an alarm if it's even slightly out of the correct position, but Terumasa has deliberately turned it off. "I don't want to disrupt classes with the alarm..." Because of this, two helpers monitor Terumasa during lectures, ready to handle any unforeseen circumstances. ■ Diagnosed with Ulrich Muscular Dystrophy at Age 5… Increasing Difficulties Terumasa Wada was born and raised in Otofuke Town, Tokachi region, Hokkaido. He was diagnosed with Ulrich Muscular Dystrophy when he was five years old. His father, Ken Wada (59): "This is a photo from when Terumasa started elementary school. When he was in the third grade, the doctor told us that he was at risk of bumping into things and falling, so it would be best to switch him to a wheelchair. So, we started having him use a wheelchair when going to school." Terumasa is the youngest of three brothers. As he grew older, the difficulties he faced increased. His symptoms worsened when he was in the second year of junior high school. He was transferred to a hospital in Sapporo, and this March, he graduated from the senior high school division of the Sankakuyama branch of Hokkaido Teine Special Needs School (Sapporo). Day by day, he was losing more and more abilities. Even so, he continued...