MDA Support

"Have you met Jenny?" I was asked as I sat at a table at the MDA holiday party.  

"No, I haven't, it's so nice to meet you," I said as I twisted around in my chair to face her.

"So, you wrote a book?"  Jenny asked.

"Yes, I just published it in September, it is about my experiences with FSH MD."

"Oh, how does that affect you, if you don't mind me asking?"

"Well, it affects my facial muscles, my shoulders, arms, and legs... among other things.  Stairs are very hard for me."

"When did you first start having symptoms?  How old are you now?"

"When I was 12, and I'm 28 now." 

"But you're so young... that's terrible."

"It is... there are even younger ones here who are going through this, or worse."  I replied as I looked around the room.  At least half a dozen kids, all boys, were obviously afflicted with some type of muscle disorder. 

"I didn't start getting symptoms until I was older, but many of my family members on my dad's side have OPMD. My eyes are getting bad, and I am having trouble swallowing,"  Jenny continues.

"I'm sorry to hear that, what about your kids?"  I asked as her son, who must have been about 10, sat next to her listening to our conversation.

"Not yet, but I wish I knew I had this before I started having kids, I don't know if I would have made a different decision, but maybe..." She said.

I couldn't help but wonder how her son felt about her saying this... but, he seemed like an intuitive kid.  Maybe he knows she just says that out of concern and love for her children. 

"Well, we will definitely read your book, I'm sure my husband will enjoy it too, he is in a wheelchair."  She concludes.

This was the first MDA "event", besides the walk in 2011, that I had attended.  There were so many families, with young kids, who obviously depended on this community for support.  When I go to things like this, I am reminded how much bigger this is.  Bigger than just me, and bigger than just FSH MD.  It makes me want to work harder to increase awareness and continue to build networks with others who are doing the same.