Time for an Update!
It's been a couple of years since I updated this blog. So what's been happening? I got engaged to the love of my life in Feb. 2022 after...
top of page
My Dystrophia
My journey with rigid-spine congenital muscular dystrophy (SEPN1)
Dystopia: an imagined place or state in which everything is unpleasant or bad.
Dystrophia: a real place or state of muscular dystrophy in which everything is ...
I am 46 years old living in the United States and this is my journey and my experiences of living with a rare congenital muscular dystrophy known as SEPN1-RSMD.
Search By Tags
bottom of page