Boys time… and MTM in the news (June 23)
Krista hit the road this morning for the US Social Forum in Detroit. She’ll be helping to lead a CISPES workshop as well as taking advantage of the amazing breadth of organizers and activists in attendance to learn about health, healing and the disability rights movement, among other things.
Back at the home front, Lucas and Burke are already missing mom but are excited that she has the opportunity to make the journey. They’re also looking forward to a little boys time. Lucas inaugurated Burke’s day off at home by peeing all over his leg as they watched the US world cup game this morning. The guys will be holding down the fort until Sunday (with help from nurses and friends), by far the longest that Krista has been away since Lucas was born.
Meanwhile, there have been some recent stories in the news about children with MTM and some small advances in research around treatments. We thought we’d share them to give an idea of the (slow) progress being made towards improving the lives of people living with MTM. Though we know that each child with MTM is distinct, it’s still helpful to hear some of the stories of families that have been facing this challenge for a lot longer than us. To that end we’ve also been in touch with more MTM parents lately as we continue to research and explore the various issues related to Lucas’s muscle condition.
Methuen boy’s journey inspires others to walk
MTM: Unlocking Muscle Fibers to Myotubularin
Comments (5)
Tio Sha
June 29th, 2010 at 1:29 am
I can’t wait to make it home to see you all again. I’ve had the chance to meet some incredible disability justice activists while being in Detroit these past few weeks, and have had some incredible learning moments about the vast difference between physical challenges and cognitive behavior/ability. That article about Joshua Frase is really awesome, makes me look forward to having conversations with Lucas as he takes in more and more of life and continues to teach us about patience and grace. See you soon! (I get home thursday night)
judi beck
June 28th, 2010 at 2:02 am
I want to echo Jocelyn’s comments. It would be great to know who you all think is doing the necessary research in this area to make some progress. This may be a longer-term project for all of you, but it would be great to know, at some point, which organizations you think might be worthy of some support.
Julie Graves, Albany CA
June 26th, 2010 at 2:17 am
I’m learning, I am learning: from My Baby Rides the Short Bus, the articles you link to above, and most of all from your blog. As Jocelyn says, it is sobering, somber even, but still, not without hope. In fact, not without excitement, though one has to assume research moves very, very slowly compared to the wings of thought and desire.
Meanwhile, there is Lucas in that great photo, getting happily into his book! I hope you find the new deployment of family forces, with Krista out and the boys at home, works out well for all of you this week.
Here’s to a good summer ahead.
Julie
Jocelyn
June 24th, 2010 at 12:23 pm
Whoa, reading those stories was quite an emotional roller coaster ride…a combination of the very real possibilities for new treatments with a very somber reminder of the challenges Lucas faces. Thanks so much for sharing. If possible, and if you ever have the time, I would love to learn more about your thoughts on the various organizations/actions being taken. If a person were to donate, do you have a sense re: which organization would be most helpful? How well supported is this research by the gov’t? how supported are the families? Again, can’t imagine how you keep all the balls in the air already, so only if you have time…
ashley
June 24th, 2010 at 11:05 am
Very interesting and inspiring links about MTM- thanks for sharing.
Enjoy your boy time!!
xo
Ashley
Leave a reply