More than four years after being diagnosed with Cerebral Autosomal-Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, Michael Kennedy isn’t letting the rare stroke disorder get him down.
He has published a children’s book to raise money for research into CADASIL.
Kennedy works at the Pink Dog Parlor in Clifton Park with his wife, Michelle, who has owned the business for 12 years.
Kennedy’s book, called “Billie’s Vacation,” is about a puppy having to be boarded for the first time and is based on a dog that stayed at Kennedy’s own business.
All the proceeds from the book are going to cureCADASIL, nonprofit that seeks to spread awareness of and finance research into the disease.
As a hereditary stroke disorder, CADASIL is often misdiagnosed as Alzheimer’s or multiple sclerosis, which have similar symptoms. Though there are currently studies being conducted to find out more about the workings of the disease, there is currently no cure. For parents who have the disease, there is a 50-50 chance that their children will be born with it.
In 1988, Kennedy’s mother lost her life at Albany Medical Center at age 45 after what doctors had assumed were complications associated with dementia. Doctors told Kennedy’s family at the time that mother’s condition was not hereditary but in 2015, as Kennedy lay in the hospital undergoing testing for similar symptoms, he realized his condition was too similar to his mother’s to be a coincidence.
Kennedy, whose left arm and leg are no longer fully functional, is on the long road to recovery and, despite being forced into uncertainty, must grapple every day with the fact that he is, on some days, physically unable to complete small tasks that, years ago, never would have posed a problem.
Over the last few years, Kennedy hasn’t had a major episode that has greatly set his progress back.
“There’s been nothing dramatic. Nothing major, but every now and then you have one of those days,” Kennedy said.
Kennedy could have another stroke or regress any day, and sometimes he goes through days where he can’t perform a physical action he could just the day before.
In 2015, his brother was diagnosed with the disease as well.
As for the book, it basically wrote itself.
Total production took about a year, but writing was always something he wanted to do, so diving in was easy, he said.
Pulling from a wealth of experience working with dogs, he felt that putting together a children’s book would be something accessible for most parents, and it has gained the support of the local grooming community.
At least one other business, Kennedy said, agreed to display the book in the shop.
Kennedy worked with The Troy Bookmakers on the project.
The book will be sold online, at the Troy Bookmakers shop and at The Book House of Stuyvesant Plaza.
Kennedy is involved in a medical study in Washington, D.C., that is focusing specifically on CADASIL.
A cure, and even understanding the disease, he said, is a long way away. But, he noted, there is now, at least, a small and growing base of support for people who were diagnosed years ago, or are newly diagnosed.
“There’s at least people looking now,” he said.