9-Year-Old with Muscular Dystrophy Ecstatic as He Receives First Electric Wheelchair
Photo: Britt Stitz and Haji Mada by Nick Wagner. Source: The Statesman.
Haji Mada, a 9-year-old from East Austin, Texas rejoiced this past December as he received his first ever electric wheelchair. After struggling for more than a year, he was diagnosed with a rare form of muscular dystrophy that completely removed his capacity to walk by himself.
Being originally from Kenya, the doctors in Haji’s refugee camp failed to identify the condition that had been affecting him since birth. It was only after he moved with his family to Austin, Texas, that Haji was able to identify his condition and receive appropriate aid in the form of treatment, as well as a brand new electric wheelchair, courtesy of Quantum.
The term muscular dystrophy references to a series of hereditary and progressive conditions and diseases characterized by the debilitation and degeneration of the patient’s striated muscle tissue, which are the ones responsible for allowing the body’s voluntary movements. Those who suffer from these diseases experience alterations in the protein makeup of their muscles, which causes the death of their cells. Most of the muscles in the body are liable to be affected by muscular dystrophy, including the heart which, if targeted, makes up the leading cause of death of those who struggle with it.
The hereditary nature of the disease makes it so that its symptoms manifest early in the person’s childhood which, unfortunately, for little Haji and everyone else with muscular dystrophy, means that they often lose their ability to walk or fend for themselves form an early age. Luckily, they are rare diseases, the most common variation being Duchenne muscular dystrophy, which affects mostly males and is passed down by the mother. Duchenne muscular dystrophy also only affects 1 out of every 3,500 individuals. Nevertheless, despite the existence of different variations of muscular dystrophy, all of them coincide in several factors, including its nature as a myopathy (which means it affects primarily the muscles), their hereditary origins, their aggressively progressive course, and in the fact that, at some point, the disease will affect the person’s striated muscle tissue, removing their ability to perform voluntary movements.
In Haji’s case, his ability to move, walk, stand, run and play with his friends had already been lost before making the move to Austin, and his mother, Hawa Hassan, had no idea as to why, since the Kenyan doctors who had examined her son weren’t able to establish a diagnosis. Luckily, she received respite in the form of finally knowing the name of the affliction that was affecting little Haji after moving to Austin and, despite not knowing what the future has in store for the young one, the family can at least breathe easier now that they know what is affecting him. In an article featured in the Statesman, Hassan mentions that her brother had a similar disease and that he sadly didn’t live to see past 25 years of age. Nevertheless, the circumstances were different, since he never received proper medical aid for his disease, and that they barely knew what was affecting him at the time.