Three years ago my nephew Matthew Sloan Walker was diagnosed with subcortical band heterotopia (SBH) at 3 months of age. Matthew is only 1 of 35 males in the entire world with this devastating brain disorder. His disorder resulted in the gray and white matter of his brain to be mixed up, as well as many of his neurons being destroyed during fetal development. His brain disorder has caused significant physical and cognitive problems and he is unable to walk and talk.
Because Matthew’s condition is so rare insurance companies frequently deny Matthew coverage for the required medical treatments, therapies and equipment to maintain his quality of life. After hearing from my sister that her and her husband had to pay $5,000 out of pocket for Matthew’s first wheelchair, I was nothing short then outraged! Soon after that “no” became a frequent response to Matthew and his family. Despite the significant documentation from world renowned pediatricians, various therapists, and other healthcare professionals, “no” was all to common from insurance companies.
In the face of rejection I decided to make it my personal mission to change something somehow, some way, somewhere! Therefore began a journey into the depths of rare disease, a place that I realized can be so isolating, lonely, dark, and many questions left unanswered. On behalf of my nephew and the many others that are faced with the challenges of rare diseases and disorders, a fight I never imagined taking on came to life.
My next posting will include how I am raising awareness in the hopes of making a change as well as the successful outpouring of support that was received in fundraisers I planned for my nephew – it has become a pay it forward effect!
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