A London mother who has cared for two children with a fatal disorder has been honoured for her efforts to make their lives rich in love and compassion.
Kazumi Alsemgeest moved with her husband, David, to London from Japan to raise their three children, only to find out in 2010 that two of them had a rare neurodegenerative disorder called Batten Disease.
The disease renders the body unable to process fatty acids, which build up in certain areas of the body, including the brain. As the disease progresses, it gradually robs their host of physical and mental abilities.
“(Rey, 10) can’t see or speak. He can’t eat. Everything is done through G-tubes. (Mei, 5) was diagnosed six months after Rei was. She no longer walks, but she’s able to crawl on the floor. She lost her ability to speak,” David Alsemgeest said.
This means the London parents do everything for them, moving Rey up and down the stairs, performing chest therapy, and taking Mei for walks with help from personal-support workers and nurses. “I just want to do everything for my kids,” Kazumi said. “I want them to feel loved.”
Kazumi was one of four caregivers across Ontario who received the Heart of Home Care Award from VHA Home HealthCare.
“Caregivers really are the backbone of home care and the health-care system,” said Carol Annett, VHA’s head.