Care Study- Muscular Dystrophy

  • For more than 35 years, Stephen has lived with muscular dystrophy. 
  • Maxim's experienced caregivers created an effective plan for optimal outcomes.
  • Stephen is an inspiration, living a full life despite his illness.

When a young couple took their five-year-old son Stephen to be checked by his pediatrician in the early 1970s, they never imagined they would uncover something far more serious. Stephen, who is now in his 40s, continues to defy the odds and get the most of out his daily life. When a young couple took their five-year-old son Stephen to be checked by his pediatrician in the early 1970s because of his unusual gait and enlarged calves, they never imagined they would uncover something far more serious. After a muscle biopsy, the seemingly healthy little boy was diagnosed with a degenerative disease that would change their family’s lives forever. 

Duchenne Muscular Dystrophy (DMD), the most common and severe form of muscular dystrophy, was slowly destroying the muscles in Stephen’s small body. To further complicate things, his brother Thomas who was 16 months younger was also showing symptoms of the disease and he too was diagnosed with DMD that same day.

As the years passed and the disease progressed, the family enlisted the help of local home health agencies to assist with general care and lifting as the boys’ bodies and muscles began to deteriorate. In 1999, Maxim Healthcare Services took on the case. By that time, Stephen and Thomas were no longer boys. They had long since outlived the average life expectancy of a person with DMD (18-20 years) and were in their early 30s.

Although Maxim was experienced in caring for muscular dystrophy patients, there were initial challenges with facilitating long-term, continued care. With a common goal of providing quality care, the family and Maxim worked over the years to establish a true partnership.

Together, Maxim and the family developed a customized plan of care, including a standard procedure for Maxim office staff to assess the dynamics of their home and case prior to assigning caregivers. After years of advocating for their children, the oldest surviving son with DMD, Stephen, who is now in his mid-40s, receives consistent, quality care from Maxim nurses and aides. Each day, this group of dedicated caregivers provides Stephen with 15 hours of care and support to help fulfill his mission of living a full and happy life in the comfort of his own home. Despite the confines of his physical limitations, with help from his family and Maxim caregivers, Stephen stays connected to the outside world and exists as a true example of beating the odds.