The Film I Almost Couldn’t Make About My Son’s Disease

My son, Lucas, has Menkes disease. Never heard of it? Not many have. We didn’t until his diagnosis came.

MenkesLukeNIHjune72011 Lucas’ diagnosis came too late. If Menkes is detected in the first 10 days of life and treated, you can live a pretty normal, long life. If not, you get a much shorter life that’s far from normal. So awareness of this rare disorder is important.

With my background producing TV commercials (and less often films), it occurred to me I might be uniquely positioned to raise awareness. I shot interviews with the leading expert on the disorder at the National Institutes of Health, people at the National Organization of Rare Disorders and two families with boys with Menkes disease.

And then I got stuck. I couldn’t bring myself to do any of the editing. Or even view the footage. I wondered if it was just procrastination. But I also thought, “Should I really waste hours and hours alone on a computer? That could be precious time spent with my son.” If the point of the film was to serve my son, wasn’t he better served if I just played with him? Cue the “Cats in the Craddle” soundtrack. Maybe that was just procrastination with justification.

When I finally forced myself to buckle down and dig into the footage, I got a whammy that seems more than coincidence. I had a colleague shoot the Australia footage, so while I knew the questions asked, I didn’t know the answers Tamara gave until I watched the tapes. Just after I listened to her say, “On a bad day we end up in the hospital,” my phone rang. It was Lucas’ school nurse. They’d called paramedics, an ambulance was coming for him. They said I should meet them.

This was the first time he’d needed emergency hospitalization. It turned out he had pneumonia and needed surgery to repair an encroachment that was collapsing his lung. He ended up being in the hospital for ten days.

Once we got through all that, I was even less interested in tackling the film. I indulged in a bit of paralyzing superstition: The last time you worked on this Luke went to the hospital, therefore don’t work on it again.

So for the next two years, whether afraid or lazy, I was not getting the film made. If I didn’t finish it, so what? Yeah, I’d feel a bit of guilt that I’d wasted people’s time and their interviews never found the audience I promised them. But that guilt wasn’t enough of a motivator.

It wasn’t until the first piece I wrote for The Mighty went up and I heard people’s reactions, that I felt I could and should finish the film. Friends, strangers and even estranged family were moved by that article, and it was enough to make me feel the film could be impactful too. So I hired an editor I’d worked with. It was a bit like paying for a gym to force yourself to work out. If I had to get the footage into enough shape for him to work on it, well that meant I’d have to work on it, too.

It took seeing the many reactions to my article here to realize I wasn’t making a film for my son. I was making it for every newly diagnosed boy and his parents. Parents who would google Menkes disease and read the worst news they’ve ever heard.

But maybe now among those search results will be this short documentary. The news in it is still grim, but they’ll also see people managing better than you’d guess. They won’t be so alone with the diagnosis. And they’ll know there’s joy ahead for them and their son.

“Menkes Disease: Finding Help & Hope,” a short documentary can be viewed here:

Find this story helpful? Share it with someone you care about.

Related to Menkes Disease

A Panera Bread Employee's Simple Remark Turned Our Dark Day Around

This is the story of how someone we didn’t know turned one of our toughest times into one of our best days. When you have a child with Menkes disease, you spend more time than you’d like in the hospital. At its best it’s stressful; at its worst, I’m ready to bark at people for [...]
Daniel's son smiling

How Parenting a Dying Child Changed All My Expectations

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care [...]

When the Internet Told Me the Way I Talk With My Daughter Isn’t Considered Communication

My daughter, Mae, is still little, and while she’s had what feels like a language explosion lately, she doesn’t have a large vocabulary compared to your average 4-year-old. If you go her therapist’s word count, Mae’s used her little voice to say somewhere around 200 different words over the course of the last 14 months. Sometimes that’s nearly [...]

Train’s Music Video Gave Me a Mommy Memory I’ll Never Forget

My 4-year-old and almost 6-year-old came out of the playroom dressed up in matching Princess Tori outfits, little fake high heels, matching Barbie guitars and crowns (that were on crooked). They were, as my 4-year-told me, “ready to rock out!” She strums the Barbie electric guitar, and the doll’s voice rings out and agrees with her: “Let’s rock out!” [...]