As you may, or may not know, over the course of the last 2 years I have worked as a private duty nurse for a gentleman with Duchenne Muscular Dystrophy. Muscular Dystrophy is a degenerative disease that attacks and eventually destroys all of the muscles in the human body. The Duchenne variety, well, it is the most rapid of them all. If you have DMD, you will eventually die. There is no cure and there is no real way to slow it down at this point either. With better doctors, better medications, better protocol, lives are being extended, but it’s a hard road.
Josh was diagnosed at age 6 and given a life expectancy of 18-years-old (20 at most). He lived his entire life as “normal” as possible. He graduated Valedictorian of a very prestiges private school in Columbus, Ohio. He went on to attend Oberlin College, a well-recognized liberal arts school known for its high standards and hard coursework, and graduated Summa Cum Laude. He thought he wanted to be a lawyer and went off to Miami University of Ohio for that degree but quickly realized that he wanted to help people more than he wanted to make money. He transferred to South Alabama University. He met and married his first wife and adopted her daughter as his own. They divorced and he returned to Ohio to work as a Social Worker for other individuals with developmental disabilities. He met his wife Kim and they were married on his 30th birthday.
The winter of 2011, I met Josh and Kim. I was incredibly nervous to come in to someone’s home as a nurse. In the middle of the night, if Josh had an emergency, it was all on me – that’s terrifying. But there was something about him that made me feel so much better. Despite being completely and totally dependent on others for his every movement at this point, Josh maintained a mostly positive attitude, a charm, an easy wit and raunchy sense of humor. It was incredibly hard not to like Josh, to not be his friend. To know Josh was to love Josh and he was both well-known and well-loved.
On February 3, 2013 Josh very unexpectedly crashed. His heart had been stricken by a major septic infection and, due to it already being incredibly week from the DMD, it gave out. He received emergency surgery and was placed in the ICU but within 24 hours it was clear that Josh no longer had anymore brain function. On February 5, 2013, Josh was removed from all life support and quickly passed away.
What his family did not know (I think myself and his aid were the only ones who did) was this: Josh had signed up to be an organ donor at the time of his last license renewal. He didn’t think he’d be eligible given the state of his body, but, as it turns out, he was. The day Josh died, he saved 3 other people’s lives. That was Josh for you. He knew he had it bad, but he always wanted to help those who had it worse.
As you can imagine, it has been an incredibly hard few weeks for Josh’s friends and family but they have decided to push on through and honor his memory by running and attending the Central Ohio MDA Muscle Walk. That’s why I’m emailing you today. I have joined their team and pledged to raise as much money as I possibly can in order to support research that might lead to the slowing or eradication of this terrible degenerative disease. I have already raised some funds (thank you Moon, Allie, Rick, and Liz A.), but I hope to raise more. Every penny helps. Even $5 is a big contribution for a good cause. You can visit my website and donate there or give me cash in person. If you can’t afford to donate but want to walk, I’ll get you that information too.
My page can be found here.
I really, really, really appreciate you taking the time to read through this email and hope you’ll consider donating.
Thanks so much,