Duchenne Muscular Dystrophy

A National Institutes of Health website reports that muscular dystrophy isn’t one disease, but a ‘group of 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement.’ The most common form is Duchenne muscular dystrophy, an inherited disorder caused by a defective gene. Affecting about one person in 5,000, mostly boys, it is characterized by a rapid loss of muscle mass starting in and spreading from the lower body.

Not long after giving birth to her daughter Lisa in 1984, Kathy Clair of Mankato, Minnesota, sensed something wasn’t quite right. ‘Lisa didn’t respond like a normal baby,’ said 52-year-old Clair in a telephone interview. ‘Her preschool teacher said she was walking funny. Then when she was four and being interviewed for kindergarten, her teacher noticed something was wrong.’

Clair soon learned that Lisa had Duchenne muscular dystrophy and that Lisa likely would not live beyond her teen years.

Today, Lisa is age 23 and Clair cares for her full-time. ‘It has been difficult,’ Clair said of the around-the-clock home care. ‘As Lisa aged, her body grew. It’s more difficult now to transfer her to a car seat, toilet or bed. Physically she is similar to an infant. She can use her arms a little, but can’t stand or move her legs.’ Also, the scoliosis affecting Lisa’s spine has become so severe that she nearly leans on her side while in a wheelchair.

When Lisa was between ages 5 and 12, she and Kathy made regular physical therapy visits. While there, Lisa often felt emotionally numb seeing so many people unable to talk or move, and she wondered if one day she would be like them. Going to physical therapy emotionally wore Lisa down, said Clair, so she stopped taking her. Almost immediately, Lisa’s spirits improved ‘immensely.’

‘Many people have suggested that I put her in a nursing home,’ Clair said. ‘But that’s something I won’t do because I feel she would be devastated (emotionally) by it. I wouldn’t want someone to do that to me. I want to keep her in a family environment.’

Clair believes her faith, her own persistent efforts building a positive attitude in Lisa, and her personal care at home are the main reasons why her daughter has had such a long life span, done well emotionally, and been pneumonia-free.