Lucas Camilo

One of the highlights of our road trip north a few weeks ago was the visit to the Beggs Lab in Boston.  In a way, going to the lab was the ultimate destination of our journey up the eastern seaboard.  Though we knew that we weren’t going to come away with any major revelations, we also figured this would be the one time to take Lucas to the lab and meet some of the researches there before moving west.

So despite limited expectations, we were excited to walk into the lab on June 27 and meet the famous Alan Beggs.  In fact, Dr. Beggs is a very gentle, thoughtful man (who’s really only famous in the world of children with severe muscle disease), and he invited us into his office for a long chat, ready to answer any and all questions we had for him.  Dr. Beggs and the genetics counselor Elizabeth (who we had communicated with prior to the visit) were excited to meet Lucas, and it occurred to us that these researches probably didn’t have many opportunities to meet the wonderful children like Lucas who are affected by MTM.

The meeting started off with a bang: we laid Lucas down on Dr. Beggs nice couch and within minutes he had filled his shorts (after a 3-day hiatus from so doing!) and was gurgling with pleasure at the feat.   Meanwhile, Dr. Beggs had launched into an overview of the different techniques being researched as possible treatments of myotubular myopathy.

First, he explained that they had already come along way in figuring out that the particular gene mutation seen in people with x-linked MTM affects the production of an enzyme called myotubularin.  Lucas’s low muscle tone (and that of other people with MTM) results from the lack of myotubularin, which in turn prevents the proper development of muscle fibers.  One thing we learned from Dr. Beggs and Elizabeth is that, based on the reading of Lucas’s DNA test for MTM, his body is probably not producing any myotubularin, whereas some kids with less severe forms of x-linked MTM do produce some of the enzyme.  They were able to determine this because the test shows that the defective MTM gene is missing a pair of amino-acids.  Since genetic information comes in triplets, missing a pair throws the entire sequence out of wack and likely means no myotubularin is produced.

Dr. Beggs explained the different directions of research for possible treatments.  Their lab is looking into gene therapy, the technique we had heard most about, in which the mutated gene is replaced by a “good” gene mechanism.  Researchers are trying to figure out how to deliver the new genetic information to all areas of the body, perhaps attaching the new genetic material to a virus to help it spread.   The concept of gene therapy has been out there for a while but researchers are still far away from making it work – whether as a treatment for MTM or any other disease.

Researchers have also been working on a technique for infusing the blood with the missing myotubularin protein.  It has been tested on mice with positive results and in recent years there has been excitement about finding a Labrador dog that also carries the MTM mutation to begin testing on.   Still, the method is in the early stages of development and needs a lot more research before it could have potential with humans.

Another area of research involves helping the muscles grow in strength, despite the missing myotubularin.  One possibility they’re pursuing is a muscle transplant-like procedure.  A person would be given new muscle fibers, which would then reproduce using the stem cells of the non-MTM muscles.  And finally, there are researchers looking into the possibility of giving muscles the capacity to grow bigger by inhibiting the action of an enzyme called myostatin that regulates our muscle growth.  Apparently, animals who have this naturally occurring genetic disorder are able to grow enormous muscles. (Beggs showed us pictures of really enormous-chested dogs and cows.)  If it worked, this kind of treatment might be useful not just to kids with MTM, but to people with other muscle diseases as well.

We knew we wouldn’t get any promises of treatments being available soon, and when we asked Dr. Beggs he walked the line of not giving us too much hope, but not dashing it, either.  He said he didn’t think anything would be ready for trial on humans in less than 5-10 years.  And he added that researchers gave a similar timeline for duchenne muscular dystrophy in the late 1980s, and yet they still haven’t found a treatment today.

The experience of being at the lab and in Boston was an important one for us and we left with a much better understanding of what Lucas’s disease is all about.  But the conversations at the lab were scientific and “interesting,” not personal.  It was only later, as we drove away, that we started to feel the heaviness of what we were learning.

Our belief has been that Lucas’s steady progress in terms of movement and strength will continue to be an upward curve.  After the experience in Boston we’re now aware that might not be the case.  Some boys who are on the more severe end of the MTM spectrum (as Lucas appears to be) have reached a peak at a young age in terms of strength and movement.  As their bodies got bigger and heavier to lift they’ve encountered more challenges, like having a hard time interacting and communicating without augmentative devices.  It’s scary to hold the possibility that all the amazing steps Lucas taken – especially in terms of his ability to use his arms and express himself through sign language – may not continue to expand.  In fact, scary is an understatement.  It’s downright awful, at times, to think about the future and the fact that Lucas could face even more physical barriers than he does now.

Of course, by the time we got home we were back to our regular routine of enjoying hanging out with Lucas and all his brilliance, goofiness, fussiness, challenges and strengths.   We continue to get excited about all the progress he makes with sign language, physical development, and everything else. Celebrating Lucas for who he is in the present remains our guiding philosophy, even if new knowledge sometimes makes us nervous about the future.

Lucas is not actually that into drawing but he sure does love eating the markers!

Lucas has been doing really well lately, making lots of progress in therapy and continuing to expand his sign-language repertoire. He’s been loving taking trips in the car – last week we drove out to the Aquatic Gardens in Southeast DC, today we went to Takoma Park Jazz festival – and is much more engaged and aware as he cruises around in his kid kart. It seems like everyday Lucas does something new and cool.

We’ve had some sometimes revealing, sometimes challenging visits with doctors and healthcare professionals recently.  A few weeks back we finally went to Children’s to see the neurosurgeon regarding Lucas’s MRI in April (a rather harrowing adventure if you recall).  He assured us once again that Lucas should not get a VP shunt (which would help drain fluid from his brain) despite the fact that his ventricles remain large from hydrocephalus.  Since the ventricles do not appear to be growing at a rapid rate or exuding pressure on the rest of his brain, a shunt is simply not worth the risk associated with surgery, infection, etc.  We expected this answer and were satisfied with it.

But his answer to our question about other possible effects of the intraventricular hemorrhaging Lucas had at birth was surprising.  In his opinion, the MRI shows a reduced amount of white matter in Lucas’s brain which could ultimately impact his development.  We had allowed for the possibility that the bleeding in Lucas’s brain when he was born could have led to other minor adaptations in his brain, but we hadn’t heard anyone talk about reduced white matter (perhaps there was a mention early on but it didn’t seem important next to everything else).  As it turns out, the role of white matter in the brain is somewhat nebulous, and the neurosurgeon didn’t seem all that concerned about Lucas’s lack of it.

According to this Wikipedia article “White matter is the tissue through which messages pass between different areas of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves, whereas the white matter represents the network cables connecting the computers together.”  It goes on: “The brain in general (and especially a child’s brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter.”

So what to make of this?  First, everyone agrees that Lucas is intelligent and does not appear to have cognitive delays, and thus our initial reaction was to not be worried.  We did inquire within some of the Myotubular Myopathy support groups and found that other boys with MTM have also had issues with white matter.  We want to talk to other doctors and specialists to learn more, and in fact our next opportunity will be when we visit the MDA clinic at Children’s on Thursday.  And we’ll continue to do more asking around and research on our own as well.

Next up was a visit by two therapists as part of an Individualized Family Service Plan (IFSP) assessment to re-certify Lucas for early intervention services.  It’s been nearly a year since his first such assessment and Lucas has come a long way since then.  Still, since we’ve contracted the physical, occupational, and speech/language therapist ourselves, it’s never been totally clear how early intervention helps us.   Mostly, it ensures that Lucas can get coverage for therapy through Health Services for Children with Special Needs, our secondary insurance.

Lots of special needs parents tell horror stories about the IFSP process and there’s no doubt it’s a strange ordeal – to have people come into your home and “rate” your child and your family as part of an institutional decision-making process which may or may not allow you to have coverage for important services.  So we were pleasantly surprised about how easy the whole interaction seemed.  It helped that Lucas was in a good mood and that the therapists were nice people; ultimately they recognized two things that we already knew: 1) Lucas is a smart kid, and 2) he needs lots of therapy.  They recommended that he continue to get physical, occupational and speech/language therapy, and the process also helped us articulate some of our hopes/goals for Lucas in the short and medium term.

Finally, last week we made out first ever trip to the urologist (adding another specialist to Lucas’s already long list of docs).  Lucas, like many kids with MTM, was born with undescended testicles, which can lead to health concerns but was nevertheless low on the list of things to deal with back when he was born (as his pediatrician once remarked, “no big deal, he shouldn’t be needing those anytime soon!”)  We won’t go into details on this point since Lucas would probably veto this as an in-depth blog topic if he had the choice, but the final word is that we may at some point choose to do a minor surgery that would mostly resolve the issue.

Despite the uncertainty of the white matter issue and the possibility of having to subject Lucas to another surgery, we can’t help but feel pretty good about where he’s at right now in terms of his health and development.  And so we’re planning a big road trip to New York and Boston at the end of June… but more about that in the next post.

Chillin' on the grass at the Takoma Park Jazz Festival (thanks Isham)

Despite his questionable fashion sense (see previous post), Lucas is doing well these days.  He’s added “cat” and “hug” to his vocabulary, and we’re working on “dinosaur” so he can start requesting more books by name.   Unfortunately he’s still reticent to perform for the camera (besides waving his arms in the universal “gimme!” sign), but we’ll catch some more video soon.

Although I’ve been back almost a week, I thought I’d write a bit about my adventures in the northwest. (Krista writing, this time.)  The trip was meant to be a combination of exploration and information seeking for our pending move, along a relaxing visit home.  And somehow with what felt like a dozen meetings scheduled in two cities over the course of 5 days, I managed to make all that happen.  Or, I should say, lots of people helped me make that happen.

Building on the research that Burke did a couple weeks ago, I went to check out another preschool in Seattle and met with a special ed service coordinator in Portland.  Both meetings were somewhat informational, but like Burke’s visit, they were also hard.  I was reminded of how complicated it is to describe Lucas.  Often I found myself really emphasizing Lucas’s disabilities, stressing that he’s going to need A LOT of help.  He can’t move his torso much.  He can’t sit up, roll over without assistance, or lift his elbows if he’s sitting up…  It feels terrible to describe Lucas in a list of negatives, but without doing this, professionals picture a more “typical” special needs child.  In both meetings the professionals tried to be positive, but their “don’t worry, we’ll make it work for Lucas,” felt dismissive.  That’s nice, I thought, but what about the fact that all the three year olds are in the sandbox right now throwing handfuls of sand at each other?  Lucas’s chair could not get in the sandbox, and he certainly can’t have sand near his neck.  I feel like we deserve more specific answers than “we’ll make it work,” but without having Lucas along side me to show off, I wasn’t sure what more to ask.

Of course I’m glad that the predominant philosophy in education now is to “mainstream” kids rather than isolate or hide away children with disabilities.  But we also know that in a classroom Lucas is going to need nursing assistance, as well as creative teachers and aids who can help him and his peers into situations where he can express himself, learn, and play with other kids.  Maybe it’s an unrealistic question to ask if those people will be there when we need them.  But I wanted to know.  Will there be an administration that really values difference, and models which embrace children of all abilities?  And will there be wheel-chair accessible classrooms?  And music rooms?  And playgrounds?

We may be starting along this path of questioning a little bit early, but it feels like we should ask these questions before we choose the school district where we’ll live for the next decade or two.  Ultimately, it seems that we’re going to have to trust that wherever we end up we’ll dig until we find the people who care about quality education for all children.

I also met with a pediatrician who we will likely choose for Lucas if we move to Seattle.  She’s been in practice for a long time, and she’s worked with many medically fragile children.  In contrast to the meetings with schools, she had a very clear idea of things she could help us with – home nursing, therapies, specialists, medical supply companies, etc.  She even offered to help connect us with other parents of medically fragile kids, and she said she’s planning on reading My Baby Rides the Short Bus.  (For our moms who are keeping the Portland vs. Seattle tally, that’s one point for Seattle. :)

One of the highlights of my trip was meeting Shannon, mom to a 9-year old with MTM.  Their first years with MTM were very different than ours – their son was 2 when he was diagnosed with MTM and 3 ½ when he got his trach.  But there are many things that felt very familiar and reassuring about meeting someone else who’s walked our path.   Maybe most significantly, in light of some of our questions about schools, was hearing that Javad is thriving in his second grade classroom, and that his “typically developing” peers love and include him.  It was also great to hear about some of the logistics of how they’ve structured their lives – the layout of their house, their nursing schedule, transportation options, power chairs and communication devises, etc.

Another major highlight of the trip was seeing some of the many people I love in the northwest.  My mom and sister and I got out for a short but beautiful hike in the Columbia River Gorge.  I got to see my friend Jennie who I’ve know forever, and who is now radiant and pregnant.  And Alice, who somehow managed to act sane and hang out with me just days before turning in her dissertation.  I was in Seattle for just 24 hours, but in that time I was lucky enough to get to visit with a few old friends as well as Ashley, Brandon, and our nieces.  Madden, Ella, and Tya stayed up late to see me, and we read bedtime stories together.  It was great to see them, and especially exciting to imagine cousin sleep-over’s that might one day have the girls reading Lucas his bedtime stories.

And it’s good to be back – I missed these guys!  Here’s Lucas working on the sign for “go.”

This morning was to be our big “March for Babies” walk, starting out at the Washington Nationals stadium and weaving 3 miles through Southeast DC.  We had 9 people signed up as part of Team Lucas Camilo, and brought in $485 in donations (thanks to all who pledged to participate and contribute!)

The only problem was that Lucas didn’t want to go… or rather, he came down with a cold and fever the day before the event and so we had to cancel for him.  The timing was certainly unfortunate, and frankly we were worried for a little while since he he got hit pretty hard.  Burke found Lucas with snot flowing out his nose at 3 am on Friday, and by 9 am he had a fever of close to 100.  That’s the highest fever he’s ever  he had — the last time he had a temperature was when he had a nasty UTI back in the NICU.  Each time he woke up from a short nap he would lie there cringing and wimpering, and by noon we were considering whether to take him into the ER.

But here’s the good news: with some extra naps and lots of love – and a dose of children’s tylenol – Lucas has recovered remarkably fast from the bug.  By late Friday afternoon he was already demanding the swing (despite himself), and this morning he pretty much seemed back to normal, other than the still flowing snot.

Since we missed the big walk today we’re planning on gathering Team Lucas Camilo for a long walk next weekend.  So if you’re around next Sunday morning, come join us for a stroll in Rock Creek Park!

(Burke writing) I made it out to Seattle on Wednesday for a brief trip, the goal of which is to do some reconnaissance for our potential move to the Northwest, as well as hang out with my family, who I haven’t seen all together since last summer.  Though we’re still a ways away from starting to pack up and leave DC, we are beginning a process (as we talked about last month) that will move us in that direction.  The first step is to figure out if Seattle and Portland – our two options – have everything Lucas needs for a good transition to occur.

In the last few days I’ve visited with doctors, preschools, and parents to learn about what Seattle has available.  It’s been an enlightening trip so far, and without making any conclusions or going too deep into details (because I don’t have much time to write), I did want to share a few things that I’ve learned.

First, even at places that are set up for kids with special needs like the Boyer Children’s Clinic and the EEU (both of which I had the opportunity to visit with my mom), there aren’t a lot of kids that look like Lucas.  Actually, there weren’t any kids with vents and/or trachs in the classrooms we observed.  I guess that’s logical since the most common disabilities that kids have don’t involve severe muscle weakness in the way that MTM does.  But it was still discouraging: on one hand, visiting classrooms, seeing 2 year-olds with disabilities participating, and talking with teachers made the possibility of Lucas someday being part of such a classroom real; on the other hand, the absence of medically fragile kids in those spaces made it difficult to actually envision.

Which made the experience yesterday of meeting another family with a child who has Myotubular Myopathy all the more amazing.  I connected with the McLaurin family through Facebook (many MTM parents are part of Facebook support groups) and they invited me to stop by their house north of Seattle yesterday afternoon.  It was wonderful to meet 3 1/2 year -old Trent and see how well he is doing: using sign language, holding himself up, taking part in the world around him.  His special needs are very similar to Lucas – trach, vent, and feeding tube being the most visible examples – but there are also things about Trent that are distinct (“every boy is different”, said his mom, who has had the opportunity to meet a number of other MTM families).  From the experience I know that Lucas is going to be excited to meet Trent and other little boys with MTM someday, and I know Krista will be excited to meet his parents.  Perhaps the best part of the visit was getting to talk to them and hear how similar we are in our outlooks about MTM, navigating the world of disability, and being strong advocates for our kids.

Finally, I miss Lucas!  It’s such an exciting stage that he’s going through right now, developing his ability to communicate through sign language, that it’s hard to be away for even 5 days.  I can’t wait to get back on Sunday and see Lucas and Krista and hear about their adventures in the warm spring of Washington DC (quite a contrast to Seattle, where clouds, rain, and highs in the 50s have greeted me – Krista’s not going to be happy about that part of the potential move report…)

On Monday we had a major medical adventure: a six-hour long trip to Children’s Medical Center for a supposedly routine MRI.  It turns out that, despite Lucas’s severe muscle weakness, he can in fact move his head when he’s trapped inside a tube with his arms buckled to his sides and horribly loud siren sounds going off all around him!

Having never experienced an MRI ourselves we assumed it wouldn’t be that different that the multiple CT scans that Lucas has undergone over the past 20 months.  And unfortunately no one really prepared us in the weeks leading up to the MRI.  We asked to not have Lucas sedated, explaining that he doesn’t move much and that he’s never had to be sedated for other such scans.  But none of the nurses responded that a brain MRI takes 45 minutes and that Lucas would get strapped down with his head locked in the middle, staring straight up.  Had we known this we probably would have thought twice about sedation.

For starters, we had to change Lucas’s trach tube since there are bits of metal in his usual Bivona trach (the Shiley we switched him to is all plastic and thus wouldn’t be effected by the powerful MRI magnets).   Then we waited for a couple hours for who knows what, and then finally they started wrapping Lucas up in this crazy contraption.  We found out then that his head would have to be held mid-line, facing straight up to the ceiling, his least favorite position.  Even before Lucas was rolled into the MRI room the tears were already flowing.

The trip into the MRI room was shaky because they had to switch him to the MRI-safe vent and didn’t have the proper respiratory equipment to make the transfer.  Meanwhile, we had been told that he could listen to music but instead they stuck giant plugs on top of Lucas’s ears, eliminating that possibility.  Still, we got settled and gave him a final suction before sending him into the abyss, with Krista standing by the machine to hold the end of his foot, which was popping out of the machine.  Then five minutes into the lengthy procedure, with Lucas’s heart rate spiking and the two of us becoming increasingly traumatized, we realized that his head was in fact moving and made the call to take Lucas out and bring in the anesthesiologist.

Ultimately we figured out that they had been unprepared for Lucas, with his trach and vent, as apparently no one had really reviewed his file and made a call about what would be needed.  It’s a complicated situation that gets us thinking about responsibility with a medically fragile child: should we have made more calls in advance of the appointment, should the complex care doctor have done more to prepare us and the radiology department, or should the hospital bureaucracy be more on top of things as it relates to kids like Lucas?  At any rate, by the time it was all over and Lucas was awake and ready to roll, we were four hours late to see the neurosurgeon, meaning that we had to reschedule that appointment for another time weeks down the line.

So after all that we won’t get an official read on the MRI results for some time.  We did hear from one doctor that the results could show a slight increase in the size of his ventricles (you may recall that this was a big issue back when Lucas’s hydrocephalus – or excess fluid in the brain – nearly led to him getting a shunt) but that it’s probably nothing to worry about.

In more positive news, we had a new nurse come for the first time in a few weeks today.  Her name is “Tope” and she seems to be very diligent and determined to figure out Lucas’s sometimes complicated schedule.  There’s less than 2 weeks until Victor returns, but with Burke heading off to Seattle next week it’s nice to get someone else ready to help out.  We want to thank all our friends for stepping up during the two weeks in which we didn’t have a second nurse.  Various people stopped by for a few hours to play with Lucas while whichever one of us was around got some work done in the adjacent room, and it was a big help.  While “babysitting” usually implies parents leaving the house, these hours that we were able to consentrate on other things while Lucas was happily entertained felt like real babysitting to us!

Spring seems to be slowly arriving in Washington DC, with beautiful, sunny days still interspersed with cold temps and the occasional wind-storm or freezing rain.  We’re excited about getting out outside for some walks with Lucas, hopefully as soon as this weekend when Burke’s parents are in town for a visit. The transition that spring represents also has us thinking about larger transitions down the line: the likelihood of leaving DC in the not-so-distant future and moving back to the Pacific Northwest.

For a couple years now we’ve talked about the possibility of moving to either Seattle or Portland, despite our friends’ great lobbying efforts to keep us here.  Both of us grew up in the Northwest, our families live there now, and the mountains, rivers, and Pacific Ocean are in our blood.  In the long run we imagine ourselves living in the great states of Washington and Oregon, and as we think about finding a more stable living arrangement – since the mid-90s, neither of us has lived in the same house or apartment for more than 2 ½ years– it’s logical to make the move sooner rather than later.

And yet there is a lot that we love about Washington DC that’s going to be hard to leave.  We’ve managed to build a wonderful community of friends and fellow rabble-rousers, and leaving DC would mean leaving that community behind, not to mention some of our favorite organizations in the world.  We moved to DC in the fall of 2007 and yet it feels like we’ve been here a lot longer.  In a city with a reputation as a transient hub (at least amongst it’s more affluent, white residents), we’ve manage to encounter a much deeper sense of community than we ever imagined when we first arrived.  It’s because of such great friends and community that it’s hard to even talk about the possibility of moving.

The other challenge, of course, will be moving with Lucas.  We’ve developed quite a network of doctors, specialists, therapists, and nurses who are part of Lucas’s team, and re-establishing that network somewhere else will take time.  For now at least, Lucas needs to be in a good-sized city that has adequate resources and support for people with disabilities.  We’re confident that both Seattle and Portland will do the trick, but it’s nevertheless daunting to imagine the process of building a whole new medical and therapy team.

So as we start to think about moving, there’s a lot that we need to investigate and have in place.  Having sufficient health care insurance in place is essential, and part of the reason we can’t just move next month is that we need to ensure we’re on a family plan that can move with us (at least temporarily) as we transition of from DC to the west coast.  Then there’s secondary insurance and the eligibility requirements and waivers necessary to get Lucas on a Medicaid-funded program locally that will cover things like nursing and equipment that may not be covered under our primary insurance.  We’ve started to reach out to parents of special needs kids in the Northwest to investigate these things, and are planning trips to Seattle and Portland in the coming months to set up meetings and continue these discussions.

And then there’s schools.  Lucas is only 18 months old but we’re already starting to imagine what it’s going to be like for him to go to school.  What are the public schools like in each place in terms of their accessibility to and integration of children with disabilities (especially medically fragile kids like Lucas)?  Are there other schools specifically for children with special needs that are worth considering?  What kind of parent and support networks exist?  (And will there be books about disappearing ladybugs, Lucas asks?)  These are all questions we’ll be looking to answer in the coming months.

We know some of our blog readers live in the Northwest, while others live in different parts of the country but have a lot of experience thinking about these challenges.  We’d appreciate any thoughts, input, contacts, and connections you may have that will help us along our way.  We’re excited but also a little intimidated about this process, and would appreciate all the help we can get.

Over the past few weeks we’ve read about some positive developments related to new research on Myotubular Myopathy (MTM), the disease that Lucas was diagnosed with just over a year ago.  A professor at the University of Michigan named James Dowling received a $350,000 grant to study a potential treatment for people with MTM.  Dowling is studying the “neuromuscular junction” – the meeting point of nerve cells and muscle fibers – in mice models of MTM, and says in an article, “We believe the results of this study, funded by the [Muscular Dystrophy Association], will lead to the first therapy for MTM.”

Meanwhile, a French doctor name Jocelyn Laporte has been researching MTM with a similar grant.  The UK-based “Information Point” website has good information about Laporte’s research, which has the goal of identifying the genetic basis of MTM, understanding the disease mechanisms; and studying the pathology and test therapeutic approaches in model systems.

Closer to home is the Begg’s lab in Boston, probably the leader in MTM research.  We talked last year about making a trip north at some point so that Lucas can participate in the research there, and it certainly would be a good learning experience for us as well.  Reading the latest news as well as the comment from Professor Dowling has us thinking again about a trip to the Beggs lab, and makes us cautiously optimistic that a treatment to help mitigate the effects of MTM could be developed during Lucas’s lifetime.

In general, we’re interested in learning about and potentially participating in studies, but at this point we remain more focused on doing all we can to make life good for Lucas within the limitations of his disability.  Which is why we’ve gotten even more excited about connecting with people around issues of disability rights.

Yesterday we had a great brunch with a group of folks who are passionate about disability justice, people who have disabilities themselves and/or family members with disabilities.  It was really nice to reflect on some of the issues we face and learn from others who have more experience than us. And, it was just fun to hang out and eat good food.  You can see the extensive list of disability themed books that folks at the brunch contributed to and sent to the local progressive bookstore Busboys and Poets.

Finally, while we’re on the subject we wanted to pass on an action to take in support of people with disabilities.  Some friends we met through the internet – who have an amazing child with similar challenges to Lucas – posted this to their site.   Lucas uses  complex rehab technology (his manual wheelchair/adaptive seating system) and will continue to need it for many years to come.  We hope others can participate in this action on Wednesday!

February 16 – National Call-in Day for Complex Rehab Technology

Help assure access for individuals with disabilities to the Complex Rehabilitation Technology they require!
• Mark the date to call your Members of Congress on February 16th.
• Tell Congress you support a Separate Benefit Category for Complex Rehab Technology (CRT) under Medicare.
• Tell Congress to eliminate Medicare’s “In the Home” restriction for CRT products.
• Encourage your friends and family to call too.
Join with thousands and register for the effort at www.CELAadvocacy.org to receive an information packet. Learn more at the ITEM coalition.

Complex Rehab Technology (CRT) products are defined as medically necessary, individually configured devices that require evaluation, configuration, fitting, adjustment or programming. Examples of CRT include individually configured manual wheelchair systems, power wheelchair systems, adaptive seating systems, alternative positioning systems and other mobility devices. These products and services are designed to meet the specific and unique medical, physical, and functional needs of an individual with a primary diagnosis resulting from a congenital disorder, progressive or degenerative neuromuscular disease, or from certain types of injury or trauma.