Today was a big day for Maya--she crashed on to the mainsteam news scene. She appears rather nonchalant about the whole thing, really. I asked her if she was excited and she used the iPad to say "milk-milk-milk-milk". So, I guess that's a no.
Several months ago I was put into contact with a reporter from Bloomberg News who was working on a series of stories about genome sequencing. At the time, we were still in talks with RGI, planning to meet with a doctor sometime in the future about the possibility of genome sequencing. We spoke with John many times over the next few months, and he came down from Boston to meet Maya (and brought a camera man to shoot some video of her playing and an on-camera interview with me--eek). We kept checking in as we went to Yale and shared our story here, and then had the fastest fundraising ever.
I kept it a secret, because news seems fickle to me, and I felt like I didn't want to mention it until it was a sure thing. A really sure thing.
Today, the article went up on Bloomberg's website. The first half of the article addresses the potential that genome sequencing has with regard to curing cancer (hence the title), but the second half is about Maya's undiagnosed story. There are 2 pictures, and then the aforementioned video sequence (which is slightly extreme-close-up for my taste, but overall well done, and I don't sound like a fool, so . . . win, I think.)
Here's a link to the article.
Here's a direct link to the video (which you can also see on the left side of the article). (Also, the video opens with one of my favorite pictures of Maya---her first "real" smile. So cute.)
And if you're interested in following the series, here's a link to John's first article (posted last week), which was the first in the series.
5 comments:
Love this! You spoke so eloquently. Congratulations for such a thoughtful interview.
I thought you and Maya were great. Eloquent was exactly the word I was thinking while watching you speak.
Maya looked adorable! I would have loved the reporter to focus on more of Maya's strengths and a discussion of the mystery of Maya's condition. Like what genetic problem can cause Maya's issues with speach yet have her still have excellent abilities in area related to language...like knowing her letters and numbers at age 3 . What genetic deletion might cause an outstanding visual memory and top notch social skills but lead to problems with balance and walking?
Great job Dana!
Thank you for highlighting the constant 'fight' with insurance (denied claims, internal appeals) as well as the schools for services and programs.
I hope your advocacy helps pave the way for the special needs children and families that will be following in our footsteps.
This is great! My son has an interstitial deletion and an interstial duplication on 16q..We did not find this out until he was around 7..he was also great with letters numbers at 3..but balance and expressive language were very difficult then..balance has gotten better and that love for letters and words has really helped him with AAC.
Great interview!! and Maya is darling!
Lauri
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