Love in Lakeville: A Family's Battle With Mitochondrial Disease

Battling a mysterious disease on behalf of tiny children is not the stuff of romance, but of true passion and resolve.

Love in Lakeville: A Family's Battle With Mitochondrial Disease

Kalynn Wendt has the more-passionate-than-life looks of someone who tumbled off the cover of a bodice-ripper romance novel. She has big, fiery, ice-green eyes, eyes that romance writers give to girls about to swing onto pirate ships or tear over the moors, eyes that sparkle from her skin of fairest ivory, framed, needless to say, by gleaming jet-black tresses.

But Wendt, whose fortress stands on a cul-de-sac in Lakeville, has two things romance novel heroines never have: two kids who can’t walk, talk, or feed themselves and are expected to die before their senior prom. So she devotes her days to therapies, doctors, specialists, and fundraising as she battles mitochondrial disease, a foe hardly anyone has ever heard of but is deadly nonetheless.

Mitochondria are one of life’s great mysteries. Many scientists think they are the spark that allowed life to grow bigger than a microbe. Once upon a primordial time, the thinking goes, a bacteria invaded a cell, survived, and set itself up as an energy factory for that cell. A happy symbiotic relationship ensued, and soon enough humankind came up with the romance novel. But when mitochondrial DNA gets a typo in it, bad things happen.

“We had misdiagnosis after misdiagnosis,” remembers Wendt, talking to me at her dining room table one drizzly fall morning as an aide sat on the floor with her children. “We had Sonora’s first MRI when she was 6 months old. They said she was fine. We knew she wasn’t.”

The Wendts visited a dozen specialists. None could tell them why their first-born baby couldn’t make eye contact, roll over, or babble. Finally a Minnesota doctor told Wendt: “The last thing you can do is fly to Atlanta for more tests.” She made the trip and came back with the answer she had desperately wanted and now didn’t want at all.

She and her husband, Justin Wendt, both have that typo in their mitochondrial DNA, so their two oldest children— a kindergartner and a 4-year-old—have no energy in many of their cells. They also have a healthy toddler, conceived with the help of specialists. Depending on which cells are affected, mitochondrial disease is mistaken for SIDS, heart disease, cerebral palsy, or autism. A Minnesotan family typically has to go out of state for diagnosis and treatment.

Kalynn Wendt takes her two children to Cleveland every three months to participate in a drug trial that she says has helped. “If Sonora got sick, she used to just stare at a wall for six months, but now the lows aren’t as low,” Wendt says. “She’s a bit of a wild one—she just screams with joy when she hears her dad in the garage, coming home. They listen to Adele or Kings of Leon and just dance. Colten’s more of a snuggler—he’s just the sweetest little cuddler.”

Sonora has eyes like her mother’s, green and luminous, though sightless; she has weighed 32 pounds for three years. Colten has deep baby blues, like his dad. “If I think about them dying, I can’t breathe,” says Wendt. “But if I think about them as 16-year-olds, I can’t imagine that either. What happens when I can’t carry them?” Now Wendt can take all three to the Mall of America—the baby in a front pack and the other two riding in a double stroller.

“I’ve been to a couple therapists. My question to them was: ‘How can I be OK with this?’ They’d say, ‘I don’t have an answer for you.’ Well, then why am I here? I have things to do.”

Things like raising money. Wendt is president of the Minnesota chapter of the United Mitochondrial Disease Foundation (umdf.org). Since joining she has boosted the proceeds of their summer walk from $2,000 to $70,000, met with Senator Amy Klobuchar and Congresswoman Michele Bachmann, and helped pass Leo’s Law, which sets aside a week in September to raise awareness of the disease. The foundation also aims to create a clearinghouse to coordinate research on the many diseases with mitochondrial components and to encourage medical students to specialize in the disease. The ultimate goal, of course, is a cure.

“What if in 20 years it’s no big thing,” Wendt says. “You just pop this pill?” As she hops up to check on Sonora, I notice the handiwork of her husband, owner of Wendt Masonry. A project is underway, he is transforming their living room, stacking stone on stone to create strong castle-like walls befitting a beauty with flashing green eyes.

“When we got the diagnosis, I was devastated. I told him: ‘I thought we were meant to be together. Obviously we’re not because we can’t have a healthy child together.’ He said: ‘We are.’ I told him: ‘Wouldn’t you be happier with someone you can build a regular family with?’ He said: ‘We will.’ He wouldn’t let go, so I got better, and we kept going. Now we just want a cure.”

With that, Wendt, not unlike a romance novel heroine, scoops up her tiny daughter, bundles her onto one hip, and charges off to afternoon kindergarten.