Lucas Camilo

Yesterday Lucas flew on an airplane for only the second time in his life. We were understandably nervous – about forgetting some vital piece of equipment among other things – but in the end it went really well… Despite some nasty traffic going through security that had Krista ready to tear someone’s head off.

There are few things in the world that could convince us to take Lucas and all of his equipment on an airplane but the MTM family conference is definitely one of them. This is the third time families of kids with myotubular myopathy have gathered for a conference – the first was around the time Lucas was born in 2009 and Krista attended the second conference alone in 2011. The opportunity to meet other families and kids, learn from doctors and researchers, share stories and build community with people that have something very big in common with us was too much to pass up.

We’ll write a lot more when we return but for now we at least wanted to share a few pictures and day one highlights… Like a visit to the Sea Life aquarium in the Mall of America (across the street from the conference center) where we also ran into Burke’s old high school friend Erin. Lucas wasn’t that into the Mall but he did perk up when the conference got rolling in the afternoon and balloons and party packets were distributed. He had a break down right as our family was about to introduce ourselves to everyone, but after some time resting in the hotel bed (which he refers to as “Minneapolis”) he made a comeback and ended up hanging in the bar with us until close to 10 pm watching the Mariners-Twins game and chatting with the locals.

We’re looking forward to another big day tomorrow!