About Us

Hank and me, just having some conversation

I am a 40-something IT guy.  I'm a bass player, hockey fan, and runner; a tattooed long-haired metalhead who gets all kinds of squishy around kids and animals, to belie that tough-guy exterior.

My wife was a legal assistant and now stay-at-home mother who digs cooking, punk & rockabilly, and has a soft spot for anything Elvis.

Our son Henry and our daughter Evie have both been officially diagnosed with Fragile X Syndrome.

My wife and I are learning and studying everything we can about Fragile X so that we can give the kids the best possible environment and support system we can.  The next step for us is to research a support system for us.

Henry, on his first birthday

We certainly aren't saints, but we do try to live as good people.  Nothing about either pregnancies has been easy, at least to the stereotype of women who claim to "love being pregnant."  It's been a battle, for both of us, having traveled all over the metro area from one hospital to another, from one system's professional office building to another system's professional building and back again, often asking ourselves what we may have done wrong in a past life to offend the universe.

But we're going to fight for our kids.  They deserve that much and more from us, because they don't know any other way to be.  A hereditary condition is no one's fault, but it's hard to remember that all the time.  And maybe adding our voice to the FX world will help make it a bit louder.

Function F(x)

Evie, the day she was born

I'm a bit of a math & science geek on top of all the rock'n'roll exterior.  Not an expert by any stretch of the imagination, but enough that I enjoy doing math problems in my free time as well as reading scientific articles and journals.

I felt that the term describing mathematical functions was particularly appropriate in quite a few linguistic, characteristic, metaphoric (and perhaps even a bit ironic) senses in relation to Fragile X.

But lest I seem completely like a bookworm, I'll also mention that I swear a lot and drink much craft beer.