Two Hastings families find a common thread in daughters with Dravet Syndrome
There aren't many people who have heard of Dravet (dra-VEY) Syndrome. It's a severe form of epilepsy that starts when a child is less than a year old. It's also incredibly rare. According to Dravet.org, there are only 7,000 to 14,000 people in the U.S. with Dravet.
Alex and Patty Dohman got a crash course in the syndrome about a year and a half ago when their second child, Clover, started having seizures. We met them about a year ago, when Clover was 13 months, and her parents were looking to the community for support in the form of a fundraiser. What they didn't expect was to make a connection with another Hastings family that was going through the exact same thing they were.
Avery Loesch, 4, experienced much the same thing Clover had. She had her first seizure when she was 6 months old, and a second one just 10 days later. But where Clover was diagnosed relatively quickly, Avery and her family endured a much longer process. At first, Avery's doctors thought she had partial epilepsy, but her seizures kept getting worse. They added more and more drugs, but nothing seemed to work. Some even made her seizures worse. Avery's parents, Debra and Brian Loesch, found out later that doctors had, unknowingly, given Avery a medication that Dravet kids should never be given. It wasn't until Avery was 2 years old that her neurologist did a genetic test and found Dravet was the real cause.
At first, Debra and Brian figured the best approach was a simple one. They didn't reach out to the Dravet community and relied on Avery's doctors to guide them in her care. They thought they were doing everything they could.
Then, about a year ago, Brian's mother saw Alex's mother hanging up posters for Clover's benefit, and they knew they weren't alone.
"I was shocked, excited, sad at the same time," Brian said.
The families started emailing each other and eventually met. The connection has been invaluable to both of them. It was in talking with the Dohmans that Brian and Debra learned how important developmental therapies are for a child with Dravet Syndrome, since Dravet can also cause mild to severe mental retardation. So last fall Avery started going to classes, working on speech and motor therapy. About a month ago, Avery started saying her own name.
Neither family was surprised that their care providers didn't necessarily know how to handle Dravet. The rarity of the condition also means there is little funding for research.
"You learn from parents," Patty said.
Another benefit the two families have is the instant understanding and support when one of their daughters has to go to the hospital. Children with Dravet Syndrome are prone to illness, and even something as innocent as a cold can quickly turn into a life or death situation, Patty explained. Last November, Clover got very sick.
"I knew a seizure was around the corner," Patty said.
So she rushed her daughter to the emergency room, but in the hurry forgot her Diastat, a rescue medicine.
"You think you're safe in the ER," Patty said, but again, because of the rarity of Dravet, even emergency rooms don't always have the medication Clover and Avery need.
So Patty called Brian, so frantic that the first few seconds of the conversation were little more than nonsense. But because he knew firsthand the situation, Brian was able to figure out almost instantly what Patty needed, and volunteered to go to the Dohmans' house to retrieve the medicine.
"No other parent is going to get that," Patty said.
Facing the fear
Because there is no cure for Dravet Syndrome, and no medication specifically for it, having a child with the condition often means parents have to stare their worst fears in the face.
"It's like pulling a pin on a grenade and you don't know when it's going to go off," Brian said.
Alex and Patty said that their fear has settled a little, now that they have more experience in caring for Clover. But any illness still sets them on edge.
Debra said she still faces the fear every day. She recalled thinking that the worst thing that could happen was for Avery to have a seizure while Debra was driving. There were questions of what she would do - would she be able to stop the car quickly enough to get to her daughter? It happened, of course. And Debra was able to pull off the road and respond before anything worse happened. And even though she knows what to do, the fear remains. How does she handle it?
"Just pray it'll be okay," Debra said.
When the Dohmans shared their story last year, Clover had been seizure free for two months. The good news didn't continue long, though.
"The past year has been really rough," Patty said.
They've worked hard to keep Clover in her therapies - speech and occupational therapy and special education early intervention. Her medication cocktail has been increased - Clover now takes three anti-seizure medications.
One struggle with medication is that one of the standard drugs for kids with Dravet isn't even available in the U.S., so parents have to go to Canada to get it - and it's not cheap.
Both families still hope for medical advances for Dravet Syndrome, but they're also being realistic. Do they think a cure will be found in Clover's and Avery's lifetimes?
"I don't know," Patty said.
"Maybe in five years we'll know something more," Brian said.
The two Hastings families are currently working on organizing a 5k fundraiser run with another family in Iowa they've become close with, in order to raise money for Dravet.org, an organization devoted to raising awareness, educating parents and raising funds for Dravet Syndrome research.
To learn more about the run, go to www.wellness