Lucas Camilo

It’s been a tough time for the community of families with kids who have myotubular myopathy.  We wanted to take a moment to acknowledge the huge challenges some of Lucas’s MTM buddies have faced, as well as a devastating loss.

We’ve been fortunate to get to know a lot of these good people through the biennial MTM family conference as well as through Facebook (and, a couple families even live in the greater Seattle area.)  There are so many ways that our lives are similar, simply based on the fact that our boys were born with the same disease.  Any time we have something going on with Lucas — for example, thinking about sleep problems and body positioning, or deciding whether to do a drug infusion to help strengthen Lucas’s brittle bones — we post the question in the MTM discussion group and get dozens of responses within hours.  And remember, this is not a huge community.  Some 1 in 100,000 kids are born with MTM and many of the kids don’t survive their first year… we figure there are just a few hundred families out there with MTM kids.  And yet many of those families have built a powerful and supportive community, and we feel lucky to be a part of it.

Javad at the MTM family conference in 2013

Certain parents really step up and act as guiding lights for the entire community.  One of those is our friend Shannon, who lives in the Portland area.  A couple years ago we had the opportunity to visit her family’s house and meet her awesome son, Javad.  It seems like every time there is a crisis in the MTM community, Shannon is leading the outpouring of support.  This time, it’s Javad who had a very traumatic episode that landed him in the ER.  It involved a major seizure, cardiac arrest, CPR, and eventually a long, slow healing process in the hospital.  Having been through a similar episode with Lucas a couple years ago — though not quite as extreme — we feel real empathy, and also feel fear and sadness, for Shannon and her family as they wait for the Javad they know to come back.  We also know the strength and resolve of Javad and his family.  Like so many MTM kids, Javad has been through much in his 13 years of life.  We are sending our most positive thoughts and tons of love during this most recent, intense challenge.

As all of this is going on, another one of Lucas’s MTM comrades is facing a major surgery.  Chris is just a few years older than Lucas and geographically the closest MTM family to us.  So we’ve gotten to know his family pretty well.  They even passed on Chris’s old hammock swing to us recently, which we promptly set up in our living room and which Lucas already loves.  Chris went through a major growth spurt in the last two years and with extremely weak muscles and brittle bones like Lucas, its been tough for his body to keep up.  So next Monday he’ll have spinal fusion surgery.  We’ll be thinking of Chris and his parents next week and hoping that he comes out stronger on the other side.

Lucas and Benjamin meet in 2013

Finally, during our stay at Children’s with Ida last month we got some horrible news: a young boy named Benjamin, who we met back in 2013, passed away.  Benjamin was an amazing little guy who inspired the construction of an accessible park in the New Orleans area last year.  We met Benjamin and his family at the MTM conference a year and a half ago and got to know his parents too, including a hilarious night when we brought Lucas and Benjamin into the hotel bar to drink beer (the parents at least) and watch a late night Mariners game on TV.   We can’t imagine what his family is going through and think about them often as they grieve but also find strength and courage moving forward in life.  Benjamin will be remembered as a fighter and a sweet, beautiful boy.

We are awed by these families and proud to be part of the MTM community.  During our struggles last month with Ida in the hospital some people praised us for our strength.  We appreciate it, but if anything, we have learned it from other families before us… and grown in our own resolve through the support of the MTM community as well as our own family and the broader community of friends around us (who have come up so huge over the last 5 weeks since our lives became a little more complicated).  For now, we want to hold up all the kids with MTM and all their families, especially those struggling the most right at this moment.