Lucas Camilo

Lucas had been preparing for more than a month for our Halloween costume — the Okee Dokee Brothers, a bluegrass kids music band that is a current favorite. Still, we scrapped together our oufits at the last second, as did Ida and Krista (Ida had rejected her big bunny costume that she wouldn’t wear for more than 30 seconds at a time). Then we all hit the street on a beautiful fall afternoon in Seattle.

We slowly strolled around the neighborhood, only managing to cover a full block loop. But we saw our old neighbors on 36th (where a number of houses have ramps that allow Lucas to roll right up to the door), and ran into other friends on our current block. All the while Lucas and I sang our Okee Dokee songs. We were probably out for an hour but it was a ton of fun. In the past, the anticipation of Halloween for Lucas has never lived up to the actual experience, especially since he can’t eat candy and usually isn’t even able to approach front doors to say trick or treat. This time was glorious.

Here’s some video of the Okee Dokee Brothers in action, along with the rainbow-dinosaur-cat-in-the-hat:

Lucas writes a fundraising appeal!

The move-a-thon .
What do i like about orca?
Music, Math, Writing wich is what i am doing right now!
Library,PE,Art,
I LOVE my Friends & my Teacher .
Even my Table name, the gaming sheepish sea creatures .
I need donatoins – will you please sponsor me?

Here’s the link

This snappy kid is fundraising for his school Orca K-8, for things like garden class, field trips, playground (which we are working to make accessible!) He wrote this fundraising letter all on his own, and it makes me so happy!- how can you not donate to this? (And another part of my pitch – the picture above of him THRILLED to be on his way to school is from last spring, when he got dressed up to present a video he made with a friend, and support of amazing staff, about how to be a good friend and take into account other people’s needs.) Like I said, how could you not donate?!?

Lucas’s 11-year old cousin Tya chose to draw and paint a picture of Lucas as part of an assignment at her school to honor one of her heroes. Here’s what she wrote, followed by the amazing picture:

My cousin Lucas is my hero. He’s one of the most inspiring kids I’ve ever meet. Lucas was born with a disease called myotubular myopathy. The disease makes it so his body is disabled. But even though he has the disease he’s still happy and positive, and that’s why he’s my hero.

Lucas is in a wheelchair with stickers on it . He has a tube connected to his neck that connects to a machine. The tube makes it’s so Lucas can breath well*. Without the tube it would be very hard to breath. Lucas is one of the smartest kids I know, the thing about Lucas is if he wants to know about something he studies about it hard. Lucas’s favorite thing to learn about is dinosaurs. He reads and watches so much about dinosaurs. I know nothing about dinosaurs so I always have to ask Lucas about them. Lucas also has really good jokes. Like two months ago we were a my grandma’s celebrating Lucas’ birthday. We were all talking to Lucas and he made a really funny joke. I don’t remember the joke. I just remember it was really funny!

* When Tya read her piece to Lucas yesterday he remained quiet the whole time except to exclaim after the part about his vent tube allowing him to breath… “and talk!”

How, dear friends, dear children if you read this some day, can I ever sit down and try to sum up our summer and now the transition to school!?!

As of September 6, Ida and Lucas are both going to school – Lucas is in third grade, and Ida is in a part time preschool. It’s been an exciting change, the transition both smoother and harder than we could have predicted.  Although in the past I’ve longed for the break that back-to-school gives me, this fall I was also sad to let our sweet, sweet summer go.

I’m so glad that Lucas kept up his excitement about blogging throughout the summer – it’s an amazing window even for us as his parents into what was most important (or silly) in a day.  And I appreciate that Lucas became our family archivist, since Burke and I didn’t get around to writing much.

And honestly Burke’s and my absence on the blog is a pretty good way to represent our summer. We were busy. Busy because raising two kids keeps us very busy in the summer, especially as Ida grows and gets to be so quick to break something if she sees us paying more attention to a computer than to her. Busy because we traveled an incredible amount (for us, at least) – I think three weekend trips to Whidbey Island, two longer trips to Oregon, and of course our major RV road trip to northern California and back. And we saw so many friends. If I dared try to sum up our summer, it would in a summer of connecting – it was a joy to watch Lucas and Ida connecting with each other in deeper and deeper ways, and then travel allowed us to reconnect with friends in the way that having days instead of hours together permits.

So before I go on to talk about school, let me just say that we have incredible friends and family. Thank you all so much for being so flexible and amazing in finding ways to connect with Lucas or meet his needs and to include us in your lives. Moments that come to mind include a vacation with Dan and Dana and Julian hanging out on Whidbey Island, including an accessible hike and a nonsense song about “pikas everywhere!” (there were definitely no pikas, for the record); another Whidbey trip when Lucas and cousins Tya and Ellody figured out a way to dance together on the porch and swinging bed; Labor Day at the Oregon coast with Eli, Amanda, Pax, Gracie, Alisha, Esteban, Aurelio and Benito, when everyone rented wheels to come out on the beach with Lucas in his borrowed beach wheelchair; a Whidbey Island “camp out” in which Jill, once again, helped Lucas get his wheelchair out in the middle of a field of goats and sheep and squawking geese; Susie and Ilana and Richard and Stef and Ki all learning to speak the nonsense language “vegemalese,” to the absolute delight of Lucas; fourth of July in our backyard with Lucas telling Mike and Carol and AnaLucia all about our RV road trip through the Redwoods; a Whidbey Island adventure out around the bogs with Nonna that led us to witnessing not one but two elegant flocks of circling white pelicans; an outing that Lucas and Ida took with Gramma and a nurse to the Beaverton farmer’s market that involved Lucas and Ida holding a pack of squirmy puppies.  And cousins!  Ida got to have multiple overnights with Ashley, Brandon and her cousins.

This summer Ida’s language really took off – she went from just saying short sentences to engaging in long conversations, making up songs and stories, and regularly asking “how you doin’ Mommy?”  (The other day she asked at a moment I happened to be rushing and nervous about work, so I decided to try to be honest and I told her I was feeling a little bit scared.  “Do you ever feel scared?” I asked as I pushed her in her stroller home from the store.  Without hesitation she nodded and said “I feel scared about porcupines.”  This is the first time we have EVER talked about porcupines, so I had to hold back a huge laugh.  I tried instead to figure out what emotionally intelligent 21st century parenting would do here — I went with thanking her for sharing, telling her we don’t have porcupines in Seattle, and that therefore I can pretty easily commit to keeping her safe from porcupines.  She changed the subject.)

Anyway, there was a day this summer that – like many days – we all came home from some trip to a library or park.  There’s always some chaos in the transition home in which Ida has to entertain herself while we take Lucas’s shoes off, take him out of his chair and get him comfortable on the couch.  Often we need to also do some other medical care or feed him, too, so there’s a period where all the adults are busy, and Ida runs around the house and entertains herself, or tries to help with Lucas’s routines.  But this summer Ida started bringing toys over to Lucas while we do all his care.  And then, there was a point where Lucas started asking her to bring things, and she started doing it.  And then, once she was standing next to him on the couch handing him things, they started talking about the things – toy dinosaurs or Octonaughts or other creatures.  And, as I went about getting tubes and suction machines, I noticed that Lucas was asking her questions, and Ida was answering.  It was sweet and new.  Spoken communication is so rarely smooth for Lucas with anyone other than his closest family and nurses.  I decided not to make a big deal out of it and just let them have their conversation.  But later that evening, we were doing our night time ritual of naming something we’re grateful for, and Lucas remembered.  He said, “I’m grateful that when I asked Ida a question, she answered me!”

So, looking inward at our family, we had a truly incredible summer.  And yet, whenever people asked “how are you doing?,” my real answer was that my heart was filled with the joy of my kids and the heartbreak of the world.  I know I don’t have to list for you the horrors, from one natural disaster after another most recently, but also the very real threats and attacks on immigrants, the explicit and implicit support for white supremacy coming out of the White House, the rise in hate crimes and continued violence against people of color… even as I start to make this list my stomach turns and my throat clenches.  The truth is that this summer also hurt, and when I try to see it all I feel scared – being so close to so much joy, while also worrying about when our kids and so many kids will begin to see the rest, too.  And honestly those moments of looking up and seeing the big picture are fleeting.  The laundry or the suctioning or the book reading or the dish washing or the pretending to have a picnic with Ida’s dolls requires all of our attention.  And I am grateful for that, too.

Last Thursday the biotech company Audentes — which has taken the lead on developing a treatment for myotubular myopathy (MTM) — announced that the first ever human patient had been given a dose of AT132, a form of gene therapy.  This is a huge development for the community of families we’ve gotten to know through MTM, the condition that Lucas was born with.  This first clinical trial for human patients (called “ASPIRO”) comes after clinical trials using dogs diagnosed with MTM; in that trial the affected dogs had significantly increased muscle strength after a series of doses using the same gene therapy model.

The press release goes on to say, “ASPIRO is a multicenter, multinational, open-label, ascending dose study to evaluate the safety and preliminary efficacy of AT132 in approximately twelve XLMTM patients less than five years of age. Preliminary data from ASPIRO is expected to be available in the fourth quarter of 2017.”

There is a lot of excitement about this development, and certainly it’s been a long time in coming. Many parents, researchers, doctors, foundations, and other supporters have done tremendous work to bring us to the point of having this complex treatment tested on children. We’ve been fortunate to get to know some of these people through the MTM family conference that we attended and through contact with one of the doctors who happens to be based at the University of Washington.

I don’t pretend to totally get the science of gene therapy, but it’s been something that disease researchers have imagined could bring profound changes to many people effected by rare and severe conditions like MTM. The hope for gene therapy has in many ways not materialized, so success with MTM would be a significant breakthrough. As I understand it, the model being developed by Audentes basically uses a virus to introduce the non-mutated MTM1 gene into the cells of kids who live with MTM. The MTM1 mutation is what inhibits the development of a protein called myotublarin, and without myutubularin, muscle cells don’t develop properly. So by essentially “correcting” the MTM1 mutation, myutubularin would suddenly be developed in the body, leading to increased muscle strength and tone.

Dr. Casey Childers, who we’ve gotten to know because he’s based here in Seattle, talks about the success of the model with dogs in this short video. At the end you can actually see the remarkable changes to the dogs based on just a few months of treatment:

Krista and I have written in the past about some of our ambivalence related to the drive for a MTM “cure.” Again, this doesn’t mean that we’re not grateful for all that has been done, nor are we dismissive of the ways that gene therapy could potential make Lucas’s life easier. The prospect of him not having to use a ventilator to breathe someday, for example, would be truly transformational for his life and for our lives.

For me, the ambivalence has to do with the intense love I feel for my son– just as he is now. MTM is part of Lucas, it always has been and always will be. There is no way to undo the effects that severe muscle disease have had on Lucas; he will always use a wheelchair, always have slurred speech, and likely always have to consume most of his food through a tube. But more importantly, his joyous personality, quirky sense of humor, indomitable spirit – these things that I treasure about Lucas are also directly related to his experience of growing up with MTM. A treatment to improve his health and quality of life – yes, if it comes to pass during his lifetime we would welcome it. But in my mind the idea of a “cure” remains problematic.

I guess that’s why upon seeing the news my thought was “cool, I should write a blog post about that.” There is, of course, also the question of whether it will actually work. Before we get our hopes up too high we have to acknowledge that something that worked in dogs may not work the same way in humans. And there other unknowns, like detrimental side effects, high costs that aren’t covered by insurance, the number of years it will take to move from an initial clinical trail on twelve kids to having a FDA approved treatment on the market, etc. And then there are the larger ethical questions around gene therapy: who gets to decide what is “normal” and what disabilities should be “fixed”; if gene therapy becomes common someday, will society be even less accepting of  people with disabilities; will it only be available to those able to afford it; and so on.

So we’ll wait and see what happens when results of these early tests are released in January. We’ll continue loving and reveling in Lucas just as he is, while cautiously wondering about and hoping for a time when his muscle disease could be made less severe.

How did this happen?  One day Ida was a baby and Lucas was in the middle of kindergarten, the next day they’re both setting off to their first day of school!

Lucas is in third grade, and Ida is starting a half day preschool program nearby.  Both kids woke up this morning very excited, and they got us to take them to their respective schools early.  When we got to school Lucas wanted to hit his favorite part of the playground, and he was curious to see what the inside of his new classroom would look like.  Ida was very excited to take her new lunchbox to school and to wear “ruffles” under her dress.  At pick up, she reported that she played with the doll house, read lots of books, sang Twinkle Twinkle and Five Little Monkey “and when the teacher said the mommies are here we said ‘hooray!”

Lucas has been writing up a storm lately – usually a short blog post every day for the past few weeks. I collected them all here, including his more obscure posts written in code. Note that there are a lot of references to the Octonauts show and the various characters from it that now appear in our lives, including all the “vegimals” (creatures that are half animal and half vegetable.)

the 1st day of playgarden camp .

we did a scavenger hunt where i would pick a color & then i would look for somthing in the playgarden that is that color & set that on the right color .
mark & i picked some blueberreis for captain barnicles & kwawzee .
it was very hot .

going to the lake .

i went to the lake .
i got my vegamals in the water .
i just filled the gup v with water & then they
could just float in the gup v .
codish & barot were there to0

i went to barbras art galary .

i saw lots & lots & lots & lots of paintigs .
my favorote ones were the vivid colerd ones .
they were called outsider paintings because
the people that made them had no training . .

our first adventure of the day.

we saw a lot of friends .
we played a game where we would throw tunip
into the fountain .
we went to their house .
i saw their dogs meez & lotus .
i thought they were cute .

the concert .

we had xylophones ,drums , bells , maracas , tweecks violin . & voices .
we did nia duck & we even made up some songs.

going to the farmers market .

the idea was that every time i ran into
someone i would just act like a meerkat .
it was funny

suward park .

i got a puget soud activities book .
it is going to be fun
i saw joee .
it had been a long time since i had seen him .
i saw some friends from school .

storytime at the dugless truth library .

it was soooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo
sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo
oooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo soooooooooooooooooooooooooooooooooooooooooooooo much fun .
we read 2 out of 3 books because we did not have time for all 3 .
but it was still soooooooooooooooo much fun .
this was because there was a parachute on the ground & in & in a little while we started doing it .

gg oo ii nn gg tt oo tt hh ee zz oooo .

mm yy ff aa vv oo rr ii tt ee pp aa rr tt ww aa ss ff ee ee dd ii nn gg tt hh ee bb ii rr dd ss oo ff cc oo uu rr ss ee bb ee cc aa uu ss ee ii tt ii ss aa ll ww aa yy ss mm yy ff aa vv oo rr oo tt ee pp aa rr tt .
bb uu tt ww ee oo nn ll yy gg oo tt 3 ss tt ii cc kk ss & ww ee jj uu ss tt ww aa tt cc hh ee dd tt hh ee rr ee ss tt .

tt hh ee oo pp ee nn tt hh ee oo cc tt oo hh aa tt cc hh ss ii ll ii nn ee ss

ee vv ee rr yy tt ii mm ee ii ss aa yy tt ww eeee cc kk oo pp ee nn tt hh ee oo cc tt

oo hh aa tt cc hh ss hh ee ww oo uu ll dd ss aa yy

ii oo pp ee nn dd ii tt aa ll rr ee aa dd yy .

zig zag giz gaz .

i went to the park .
each time i said zigity zagity zoo we would spin around .
we had soooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo
ooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo much silliness there .

day 2 of aquarium camp .

this is octopus camp so evry day is a new octopus .
the octopus of yesterday was the giant pacific octopus .
the octopus of today was the red octopus.
evrey octopus is a suprise .
i saw me in a video . (me as in peso)

day 3 of aquarium camp .
the octopus of the day today was called the caribeen reef octopus .
we did a game called ocean motion very simalar to simon says but it is about the ocean .

[This section is from our trip to Portland]

how it feels to be at dashys house .

dashy is grammas octonauts name .
anyway it feels very very very very very very nice.
it was the fastest drive even though it was 3 hours .
i am having fun so far .
i went to the beaverton library .
i found some duek eligton & some elephants gerald .

tt oo nn ii gg hh tt .

hh oo ww ff uu nn ii aa mm hh aa vv ii nn gg aa tt dd aa ss hh yy ss hh oo uu ss ee ..
ii aa mm hh aa vv ii nn gg ss oo oo oo oo oo oo oo oo oo oo oo oo oo oo oo oo oo mm uu cc hh ff uu nn .
tt hh ii ss mm oo rr ii nn gg ii tt aa ll kk ee dd ww ii tt hh cc aa pp tt ii nn bb aa rr nn ii cc ll ee ss & ii tt hh oo uu tt aa bb oo uu tt mm oo vv ii nn gg tt oo dd aa ss hh yy ss hh oo uu ss ee tt oo oo.
bb uu tt nn oo tt uu nn tt ii ll …

i s a w a w o m a n i n a w h e e l c h a i r . .

t h i s w o m a n h a d a d o g n e x t t o h e r c h a i r .
t h e d o g s n a m e w a s b e l l a .
& t h e n w e s a w 4 p u p p y s n a m e e d a t l a s , j u p i t e r ,a r t e m i s , & a p o l l o .
a t l a s w a s n i c e & s w e e t w h e r e a s t h e o t h e r 3 w e r e s q u i r m y .

g o i n g o n a n a d v e n t u r e .

w e d i d n o t f i n d m y d i n o s a u r b u t w e d i d f i n d s o m e d o g s
2 n a m e d r u b y & b r u s e
1 n a m e d l o g a n & 1 n a m e d h a r v y .
w e g o t s t u c k b e c a u s e o f t h e b e a v e r s b u i l t a d a m .

h o w f u n i a m h a v i n g a t d a s h y s h o u s e .

i a m h a v i n g s o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o m u c h f u n h e r e .
l e t m e t e l l y o u a b o u t t o d a y .
i w e n t t o a p a r k w h i c h r e a l y w a s a n t r e a l y t h a t m u c h b e c a u s e m y v e n t & m y s u c t i o n m a c h i n e w e r e d i e i n g . .

g o i n g t o o m z i e a s c i e n c e m u s e o m e o n e w i t h i n o r e g o n .

i s a w a t r a k e j u s t l i k e m e
h e r n a m e w a s p h e e b e .
i d i d t h e s e a r m r o b o t s .
i g o t a d i n s o s a u r p r o g e c t e r w h e r e i t p r o g e c t s d i n o s a u r s o n t h e w a l l .

the solar eclipse .
it was sooooooooooooooooooooooooooo cool .
me & my new tunip were wearing eclipse glases .
i looked at it many times .
at first it looked like the sun but then when we reached Jefferson Park the sun looked more like the moon .
& it got very cold .

Photo credit: Burke

Photo credit: Burke

Photo credit: Naomi Ishisaka