This past weekend Mark and I attended a conference in Columbus, Ohio on Muscular Dystrophy. We heard about it through our local chapter of MDA and thought, why not?
Typically my mom attends all of Liam’s doctors appointments with me so Mark doesn’t have to take off work, and because my mom asks some pretty amazing questions of our doctors. This conference was a great opportunity for Mark to learn a little more about the disease. I was thrilled to have a day away from my typical mommy duties, and we took this as an opportunity for a weekend getaway. I guess this counts!
We sat for hours in a chilly hospital conference hall listening to speaker after speaker talk about dystrophin, fibrosis, pulmonary function, possible heart failure, TiLite wheelchair, drug trial after drug trial, the years and years it takes a drug to get to market and technical terms that I can’t even recall. I’m used to this now. It’s part of our new normal.
What became pretty obvious around lunch time was something I didn’t expect.
The description of the event was for Muscular Dystrophy. It may seem pretty specific, being that it is a rare disease. Yet, as the day rolled on Mark noted “they keep saying our boys, our boys.” They are saying this because even though women and girls can have MD, the most common form of MD is Duchenne which primarily affects boys (note, I don’t say men, because the life expectancy is 25 years).
It is incredibly painful to know that your child’s disease is too rare to be discussed at a Rare Disease conference.
Liam is 1 of 18 people in the world who have the same subtype of LGMD. Including only 2 other children that live in the United States.
We all want our children to be exceptional. Just not in this way.