Lucas Camilo

On Friday morning we read a single line from a parent of another little boy with MTM – “We held Matteo until his heart stopped beating at 4:30 am.”

Everyone in the MTM community had been following along for a week after Matteo suffered a devastating seizure and cardiac arrest that left him in a coma.  It’s impossible to describe the feelings of heartbreak we felt during this time… not to mention total admiration for the family as they struggled through the final days of their son’s life.

Since Lucas was born a number of boys with myotubular myopathy have passed away but Matteo is the first who we actually got to know.  We met him at the MTM family conference in Minnesota this summer and he stood out as a bright presence – slightly older than Lucas and doing so well in school, and in the world, that he gave everyone hope.  We also marveled at how amazing and dedicated his parents were, having driven from southern California with Matteo in order to be at the conference.  Donald, Matteo’s dad, gave us a tour of their van and proudly showed off various ingenious adaptations (as Burke took notes).  His mom Nancy joined a small group of parents that we helped organize for a two-hour session of personal sharing about the challenges of raising kids with MTM, and she was extremely thoughtful and caring in her words.  We talked about setting a meeting place somewhere in Northern California where we could get together and have a mini-west coast MTM conference some time in the future.

Matteo’s seizure was sudden and his death totally devastating for everyone.  And yet this is the reality of loving a child with a severe neuromuscular disease like MTM.  What was perhaps most powerful and heartbreaking about Donald and Nancy’s updates during the last week of Matteo’s life is that we could imagine ourselves there, in that hospital room, in that situation.  They described doing things we have done — washing the gluey gunk off after an EEG test, singing your son’s favorite song to him while he sleeps, and hoping and praying with all your soul that things will get better.  Donald and Nancy have been incredibly open, inviting the MTM community in to witness their painful journey these past days.  Other families who have lost children have in turn responded with sympathy, telling about their first days home after losing their children.  The rest of us know we could be in their shoes, and we send so much love, because that’s all that we can really do.   But we also hope that when we need it, we find a way to embody the courage, poise, love, and humanity that Donald and Nancy have shown in the last week.  Just one example of their big-heartedness in the midst of tragedy is that they worked out complicated logistics so that at least four other children benefited from Matteo’s donated organs.

Death puts everything quickly into new perspective, like a rapid zooming-back of the camera so that you can see what was always there, barely out of view: that we are mortal, and that our lives are fleeting.  We’re trying not to give Lucas too many more squeezes (he’d be annoyed that we were interrupting his precious reading and spelling time), but we are feeling extra aware of how precious our time with him really is.