Lucas Camilo

This morning we woke up in our hotel room at the Best Western in Minneapolis to the sound of Lucas moaning and calling out for help.  After a half hour of suctioning, nebulizer treatments, and more suctioning, we started to face the reality that Lucas was getting sick.  Our plans for another powerful day of family conferencing – not to mention our return flight to Seattle – flashed before our eyes.  We started making contingency plans and bracing for the worst.  And then all of a sudden Lucas smiled and said “you want to play the I Spy game!”.  Just like that he was back to normal and we were off to breakfast.

It’s hard to describe how important being at the myotubular myopathy conference has been for us and all the other families here this weekend.  Sure, there was lots of fascinating and groundbreaking medical research presented to the group as part of the rather remarkable progress that has been made towards a treatment for x-linked MTM.  But most importantly for us, being at the conference was about connecting with, sharing, and learning from other families of kids born with MTM.  Being parents of a child with a disability can be very isolating, even more so when that disability comes from an extremely rare gene defect that causes the child to be medically fragile.  There’s just a lot of stuff you deal with that no other parents can really understand or relate to.  And then you walk into the 2013 MTM family conference and look at the wheelchairs rolling all around, and hear the whirr of multiple suction machines and the annoying beep of an errant pulse odometer… And, as conference organizer Erin Ward said during the opening, it feels like home!

As we watched another couple switch out an oxygen tank – gracefully and in perfect sync with each other – or a father gently suction his son’s trach while carrying on a conversation, or a mom expertly pick up her 2 year old with low muscle tone, taking care to maneuver around the vent circuit, we thought “that’s us!”  Discussions about highly specific technical and medical information felt completely natural and often totally exciting, and we learned as many tidbits from other families as they hopefully learned from us.  In a conversation on Saturday afternoon that we facilitated, moms, dads and siblings talked about challenges and triumphs related to travel, school, nursing, family relationships, and other topics.  At every step of the way, the connections we made felt deep (especially given how little  time we had known people) and empowering.

We went through some ups and downs over the course of the weekend, and dealt with tough emotional and logistical challenges.  But in the end we are so grateful to have been able to attend the conference as a family.

Lucas sings “Take Me Out to The Ballgame!” (He got a little nervous…)