Bulbospinal Muscular Atrophy

I don’t know how you do it. I get that all the time. I often wonder why, because it seems like anyone in my position would do it. The funny thing about this comment is that no one, at least outside of your immediate family or medical team, knows what it is you do. I’m [...]

Nine years ago, I took my son, Jacob, to a routine well-baby checkup where I was told that there was something “wrong” with my child. Labs were drawn and I was sent home to wait for the results. Three weeks later, my husband and I were informed that our 9-month-old infant had a terminal and [...]