Hello, my name is Carla and my late husband had Kennedy’s Disease.
It was 1989 and we had been married for nearly 13 years when my husband received his diagnosis. During normal conversations with his siblings, my husband realized he had been experiencing some symptoms that were very similar to those of one of his brothers. Not long after, this brother contacted us and explained that he had gone for testing and had been given the diagnosis of Kennedy’s Disease. He encouraged my husband to contact his physician and get tested. After lab work, many EMG’s, and a muscle biopsy, he was originally diagnosed with something other than KD; something called Kugelberg-Wielander Syndrome. Then, his younger brother told us about discovering the Kennedy’s Disease Association website while searching the internet and shared what he found with us.
Thank you to Susanne and Terry Waite and their partners for the efforts they made to bring awareness to this disease by starting the Kennedy’s Disease Association! It is because of the research you sought out, pursued and shared with so many others that I am involved with this group today.
My husband, a certified Master Automotive Technician, had a true passion for automobiles, especially the muscle cars of our era and classic cars of the 50s. So it was nothing to see him out in the garage after work helping neighbors and friends with their cars. He truly LOVED all types of cars. We had many different vehicles grace our driveway throughout the years; everything from regular daily drivers to classic and show cars. KD changed all that.
He was one of five siblings and it was soon discovered that all of them were affected. So, that meant not only himself, but his 3 younger brothers, and his older sister. All except one brother have since passed. We have 3 children (one son and two daughters) and 5 grandchildren (3 boys and two girls). There are many others throughout my husband’s “family tree” that are also affected.
It is in their honor and memory that I choose to be involved with this group.
Please consider donating to help fund the ongoing research with hope that this genetic disease will someday no longer be passed from one generation to the next.
In memory of my husband of 36 years:
Stanley Highe – 1952-2012
