A friend posted this incredibly moving article to his Facebook page because he knows one of the authors. It tells the story of Jenn McNary and her two sons, Austin and Max, who both have Duchenne Muscular Distrophy (DMD). Typically, a person with DMD is not expected to live past the age of 20. Austin is 14 and confined to a wheelchair. Max is 11 and is able to run, skip, and jump...because he has been receiving an experimental drug for the last year and a half as part of a drug trial that his older brother did not qualify for. The article goes into detail about their mother's struggle both to care for the kids and to get access to the medication for her older son.
This story is framed in such a dramatic way--brother and brother--that it has me thinking about the other children and adults living with disabilities. DMD is known to be fatal, which puts a particular point on the story of Jenn McNary and her two boys, but there are so many people for whom their disability is not fatal. They live with their situation day in and day out, and often there are no cures. I don't mean to sound dramatic, but reading about how one boy is living a more-typical life while his brother falls further into disability is heartbreaking. I feel so much for their mother and step-father, and it makes me conscious that there will be parents of the children with disabilities in my classrooms. It's one thing to prepare myself for the challenges of enabling children with disabilities, but I need to also be aware of the struggle their parents and family members might be experiencing. The children might be handling their situation one way, and their family might be handling it very differently. As I strive to include parents in the education of their children, whether or not they are disabled, I can't lose sight of their individual experiences with caring for their children.
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