Lucas Camilo

Today was another beautiful day in Washington DC, so this morning after physical therapy Krista and Lucas went outside to bask in the sun… and play and study.  Krista is nearing the end of her yoga teacher training program, so she took flashcards out to practice her Sanskrit.  Lucas, meanwhile, is more and more motivated to practice sign language, so he took his new baby ASL flashcards and went through the deck signing “swing” and “book” and “more” at the pictures on the cards.  It was a very productive morning.  (Lucas also took breaks from studying to taste and kiss the cards.)

Besides giving a Lucas update today, we also wanted to share some news, projects, and interests that have our attention right now, and invite you to join us in supporting any or all of them if you’re so inspired.  We’re sharing this list in part because people have asked us if there’s a foundation or organization where they can give donations to support Lucas and children like him.  So here’s an attempt to start a list like that.

First, this past weekend was the national “fun run” fundraiser for ADAPT, an amazing national grassroots disability rights organization.  The “run/walk/wheel” event was on Sunday, and then on Monday, a group of ADAPT activists went to Congress to protest the Republican-proposed cuts to Medicaid.  They occupied the rotunda of one of the Congressional office buildings, and 89 activists were arrested.  One of their main demands is for Medicaid funding to continue to cover in-home services so that people with disabilities are not forced into institutions, which of course are more costly AND often less humane than allowing people to stay in their homes.  This issue obviously resonates very personally for us, since at one point we had to fight to get in-home services in place to be able to bring Lucas home.  So we’re excited to be supporting ADAPT (together with Krista’s yoga students who also donated to the fun run!), and wanted to invite others to join us.  You can donate to ADAPT here.

Lucas in training for Saturday's walk

This weekend we’re going out for the DC March of Dimes “Walk for Babies.”  We figured this might be a fun, accessible public event that Lucas would enjoy participating in.  (As opposed to a raucous street protest with giant horns and puppets.  We’ll see what he thinks.)  The March of Dimes does good work to improve accessibility of prenatal health care and to support preemie families.  When Lucas was in the NICU we got orientation materials from the March of Dimes, and now we’re on the Parents Advisory Council that they coordinate.  So we’ll be walking (and rolling) as Team Lucas Camilo.  You can sponsor our team online by going here.

And then there is the cause that is most directly linked to Lucas.  A number of MTM families are walking in June to raise money for the Begg’s Lab research on Congenital Myopathies (the category of disease that includes Lucas’s neuro-muscular disease, Myotubular Myopathy).   Although we generally assume that the research has a long way to go before it translates into possible treatments or cures, we’re excited that there’s some hope for treatment in the not so distant future.  And in any case, we’re happy to be supporting this walk!  If you want to learn more about the walk and the Beggs lab, go here and to donate to support myopathy research, go here.

And in news less directly related to disability and disability rights, we’ve been following the case of an experienced Virginia home birth midwife who is being prosecuted for a baby’s death at a birth she was attending.  It is a long story that you can read some about in this Washington Post article.  In the words of our midwives Mairi and Erin (who followed Krista’s pregnancy and would have attended our homebirth had circumstances been different), “Since her arrest Karen has been ordered not to attend any more births.   Already there are not enough midwives to meet the needs of women and families seeking home birth in the DC Metro area.  We turn families away every month.  Karen has attended over a thousand births.  She has been tucking mothers and babies safely into their beds after birth for 20 years.  There isn’t a midwife available to replace her… Karen faces spending the rest of her life in prison.”  Even though Lucas needed to be born in a hospital, the prenatal experience we had with midwives was wonderful.  And should we ever get pregnant with a Lucas-little-sibling, we’ll want the support of home birth midwives again.  Mairi and Erin suggest that to support Karen and midwifery more generally it’s important to counter negative depictions of midwives with positive stories.  So if you have those, you can share them here and here.  And we’ve also donated to Karen’s legal defense fund.

And finally, if you asked Lucas how you could support him, he’d make two fists and enthusiastically rotate them back and forth in his patented sign for “swing.”  So if you’re around DC, come over and give Lucas a push!