If anyone knows about the challenges and hardships associated with neuro-muscular diseases, it’s Nadine Kirby. Nadine is the creator of the nation-wide “Light It Up Green For MD” campaign, which is designed to create awareness of the many types of muscular dystrophy disease. The ailment hits close to home for her. Nadine’s son, David, has Duchenne Muscular Dystrophy (DMD), a disorder that starts in childhood. DMD is a muscle-wasting disease that affects all of the striated muscles including the heart, lungs, and diaphragm. David was diagnosed with the disease when he was three and a half years old. Over the past 20 years, his muscles have slowly lost strength and this has made daily activities increasingly difficult to manage. Nadine explains: “David faces a multitude of daily struggles in everyday life, including the inability to care for himself in the ways that other people can. Dressing, feeding, getting in and out of bed, bathing, etc…”
While these activities will never be routine, Nadine can point to areas in which life is made easier by the help of certain HME products. One example is with bathing. Given David’s condition, ensuring his ability to breath properly was paramount when considering a bathing chair. This is where Raz Design provided a solution. The Raz-AT is a rehab shower commode chair designed for toileting and showering. “We chose the Raz-AT bathing chair based on his needs since we needed both recline and tilt for breathing purposes as well as access purposes” Nadine explains. For Nadine, these are essential functions that allow her to bathe her son with confidence, knowing that David can breathe well in a tilted or tilted and reclined position. Because of David’s weakened muscles, maintaining an upright upper-body posture is difficult. A kyphotic posture can restrict diaphragmatic excursion, and thereby inhibit breathing. While in tilt, gravity works to reduce the slouching effect of the upper-body and position the body for better respiration.
Nadine can’t stress the importance of their Raz shower commode chair in her family’s life. “A bath chair like this is an extreme necessity since our children lose every ability and bathing is a definite basic human necessity,” she explains. Over time she has found that another attribute of the Raz-AT is its durability. “We wanted it to be able to last for quite some time, since other bathing chairs are not as durable… This chair is more than what we expected, which is wonderful.”
Nadine knows that the struggle against neuro-muscular disease is a hard-fought, uphill battle. She works tirelessly because of the many challenges faced by her son. Nadine and David crusade tirelessly in an effort to raise awareness, and funds, to support the cause. Her ultimate goal is to get all 50 states to declare August as both Muscular Dystrophy awareness month and Light It Up Green month. Meanwhile David has been a Goodwill Ambassador for the Muscular Dystrophy Association.
While Nadine is promoting the “Light It Up Green For MD” campaign across the US, Raz is working to ensure that families like Nadine’s can have one aspect of their lives made a little easier.