“Before my Mike was diagnosed, I thought the reason he wasn’t trying to crawl or pull himself up was because he was just a chubby baby. Then, at his 9-month check-up, the doctor could not get a reflex response, and I could tell by the look on his face, that he was concerned.
We lived in Central Pennsylvania at the time and were sent to the Children’s Hospital in Pittsburgh for testing. Mike was diagnosed on a discharge summary with the words “Anterior Horn Cell Disease.” I actually chased the doctor down the hall and breathlessly asked him what that meant. He replied, “Make an appointment with the Clinic.”
Anterior Horn Cell Disease was then called Werdnig-Hoffman Disease and eventually Infantile Progressive Spinal Muscular Atrophy and now just SMA—typing the severity as 1, 2 or 3. My Mike was Type 1, or the most severe, with a shortened life expectancy and he outlived all expectations and blazed a trail for inclusion in education, accessible testing and developing Assistive Technology.
My Mike was scared after the last election—afraid that he would no longer receive the funding he needed to remain in our home; afraid that he actually might be forced into an institution and NOT EVEN IN THE STATE OF FLORIDA.
Individuals with disabilities are being impacted the most in this COVID-19 Pandemic and our Governor and the Trump Administration are doing NOTHING to protect the lives of the most vulnerable.
With 26%—or 1 in 4 voters—in this country identifying as having a disability, their voice MUST BE HEARD! We’ve often heard the expression, “Vote as if your life depends one it”, well, that expression has never rung more true!
My Mike lost his battle with SMA on March 26th, but I will continue to do battle in his name.”
– Karen Clay, Chair of HC Democrats Disability Caucus, Co-Chair of the DNC Disability Council (SE region), and member of the Florida Democratic Seniors Council.
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