Coming out

Meet my wonderful, handsome husband.

Scott works 50-60 hours a week, lifts weights every morning before work, teaches a spinning class two evenings a week, volunteers at our church, pitches right in around the house when he gets home from all of this, and is sweet and loving to me and our children. He also suffers from a disease called Freidreich's Ataxia.

We've suspected Scott has a problem for years now. Way before we noticed anything was wrong he realized he just wasn't any good at basketball anymore. He couldn't keep his balance while rollerblading. And playing football wasn't working either. A few years later he started to notice that he couldn't keep his balance very well when walking. He saw a neurologist in Lubbock who ran some tests but couldn't find anything that fit.

Fast forward to our move to California. Scott consulted a neurologist here who referred him to UCLA, where they very quickly recognized his disease. They ran a blood test and we had the verdict: Friedreich's Ataxia, a debilitating, progressive neurological disorder that doesn't affect the mind, but leaves him unable to control his body the way he ought to be able to. The disease affects his hands, making everything he does take more time. Typing, writing, spreading peanut butter on a sandwich, buttoning a shirt, he can do them all, just more slowly. The disease affects his speech, making it sound a little more slurred. He sometimes chokes while drinking. And most noticeably it affects his ability to walk. He can't walk in a straight line to save his life. If he slips, he can't recover fast enough to keep from falling. He can't run, or keep his balance on a bike, or catch a football. His body just flat out won't do what he tells it to anymore.

Freidreich's Ataxia is a genetic disorder. There's nothing he could have done to prevent it. Both of his parents carried a gene for it and unknowingly passed the gene on to him. Our children will not have the disease because I am not a carrier, although each of them are carriers themselves. It felt like a huge boulder was lifted off my shoulders the day we learned that I am not a carrier. FA is typically a child onset disease and thinking of the horror stories I'd read on the internet terrified me every time I watched one of my children stumble or trip. Now I know that their falls are normal, not the harbinger of a devastating disease, one that becomes more so with an earlier onset.

There's no cure. No medication to take. Scott exercises and keeps his body strong, he takes antioxidants to diminish the impact free-radicals have on his mitochondria, he tries to get enough sleep, eat right, and not overdo it. And that's really all he can do for now.

We hope the future holds some medical breakthroughs. We have no idea how much FA will affect his quality of life down the road. Chances are he will never suffer from the more serious complications of heart disease or diabetes. But we don't know if he'll need a wheelchair at some point or even if it will become noticeable to everyone who meets him. Right now it still takes being around him a little to notice that something is wrong.

I share this with you not to bum you out or make you feel sorry for us. We're good. The disease stinks but we're making our peace with it. We know life isn't supposed to be easy and perfect and we also know that we've been incredibly blessed. Scott has a world-renowned FA expert for a neurologist and she's only a couple of hours away. We have 4 incredible children who will never suffer this disease themselves. We have supportive families, good friends, and most of all, the love of our Savior, Jesus Christ, that supports us in all we do. So I'm just sharing so that you know.

For more information (or to make sense of my poor attempts to explain FA) go here: