Lucas Camilo

It’s taken us a while to get settled back in Seattle after the MTM family conference.  After a very busy week catching up we finally have some time to write more about the experience.

As we said in a previous post, the highlight of the journey for us was meeting other families and being in a space where we could learn from each other.  We’ve heard that some of our MTM friends felt let-down after leaving the conference and perhaps that’s true for us as well; the sense of connection and belonging that we experienced during 3 days in a Minneapolis hotel is not something we feel every day.  The funny stares when we fire up the suction machine or the quick look away of people who can’t bring themselves to witness Lucas and his ventilator – all that is real and it’s only when you spend a few days surrounded by people totally comfortable with vents and suction machines (not to mention all the other equipment) that it feels disconcerting to be back in the role of “other.”

But it was more then just the fact that people were accustomed to a kid like Lucas.  It was celebrating and laughing as we told stories about our life with Lucas, and seeing a look of total understanding on the face of someone else.  It was also important to be able to talks about the harder parts of life, the frustrations and challenges, and even grieve a little.

So yeah, the conference was great for us… but, as people have asked since we got back home, did Lucas have fun?  From what we could tell he also enjoyed himself (he often said “You’re at the conference!  We’re in Minneapolis!”) and though it was tough at times to get him interacting with the other kids, we’re very glad that we figured out a way for all of us to go as a family.  He was in such a good mood the opening night of the conference that we took him to the hotel bar with another family to watch the Mariners-Twins game on the TV.  Needless to say it was a pretty funny sight to see two MTM kids and all their gear sidled up to the bar.

It was interesting to meet the other kids and learn about similarities and differences with Lucas.  For example, Lucas still refuses to use the first person when referring to himself  and we learned this was also true of a couple other kids.  Andy is a smart kid in the 5th grade who still refers to himself in the 3rd person (Lucas prefers the 2nd person as in the title of this blog post).  A lot of the kids tend to be very focused and skilled at memorization and attention to detail.  They also have trouble expressing emotions.  Indeed, a couple parents mentioned that the idea of their kid being on the autism spectrum had come up more than once.  This is something we’ve also started to talk about lately… but the doctors and specialists are so focused on Lucas’s respiratory system and physical health that sometimes it feels like no one bothers to noticed that he also has a brain…  and that his cognitive development is a little quirky.  The parent-to-parent session at the conference gave us a great opportunity to talk about all of this.

One final thing we noticed through observing and interacting with the other boys is that Lucas tends to be on the lower end of the spectrum when it comes to muscle strength – most of the other kids, for example, can sit up on their own and/or hold their heads up (Lucas needs assistance for both).  This was hard for us, and we couldn’t help but feel envious at times and wish that Lucas was just a little bit stronger.  On the other hand, he tends to be on the upper end of the spectrum when it comes to communication skills.  We do feel very fortunate about his ability to verbalize and say what he wants.

Going back to the medical research, this was another area where we found ourselves with mixed emotions.  On one hand, its very exciting to see all the progress that has been made (we mentioned some of this in a previous post back in May).   We knew a lot of the general information about the MTM research, which is advancing in two realms: gene transfer therapy and enzyme replacement therapy.  The former has made the most progress in the last year, in particular through trials involving MTM-affected dogs.  There is no assurance that successful trials in dogs will lead to success in humans, but the research has come far enough along that private biotech companies and venture capitalists are jumping into the mix.  So in addition to the doctors we heard from some of the leaders of these companies who plan to move the research towards clinical trails in humans – which is to say that some of the kids at the conference could someday be the beneficiaries of such a treatment.

Even as we worked through our skepticism about the interplay of capitalism and disease research, we found ourselves cautiously optimistic, but perhaps not as exuberant as some others in the room.  Clinical trials are at least a few years away, and an actual treatment on the market is a few years beyond that.  What’s most important for us is to keep doing everything we can to make a good life for Lucas in the here and now, while also supporting advocacy and accessibility for people with disabilities.  We’re grateful for all those who are so invested in producing a treatment for MTM, and for everyone who challenges those aspects of our society that tend to limit the lives of people with disabilities.

One final highlight of the conference was the variety show on Saturday night.  Lucas was up first and was totally ready to sing “Take Me Out to the Ballgame” (he’d been practicing for weeks)… until Burke put the microphone in front of his face.  There was a long silence as we waited for him to start singing, broken by Lucas pointing to the mic and saying “you wanna put that away!”  The rest of the crowd ended up joining in for a rousing rendition of the song, and though Lucas pretty much refused to sing, he did motion “1-2-3 strikes you’re out!” during the final stanza.  And later in the hotel room he redeemed himself  (see video at the end).  There were other great performances, including a 19-year with MTM lip-syncing a Bill Cosby monologue, as well as some of the doctors and researchers doing a sing along of John Denver’s “Country Roads” (a favorite of Lucas as a baby).

Finally, we want to thank the organizers of the conference (Erin, Mark, Shannon and Marie) who did an amazing job making it happen, as well as others like Paul and Alison Frase (co-founders of the Joshua Frase Foundation) who have helped make this coming together possible. There was so much that was great about the conference that we find ourselves scheming about ways to continue connecting in person with the families that we met, as well as others who couldn’t make the trip to Minnesota.  Already there are discussions about a west-coast MTM gathering that would focus entirely on hanging out and sharing between families.  We’re looking forward to it…

“Take Me out to the Ballgame”

Another video of Lucas and mommy playing baseball in the kids area at the conference: