Running… running… Dana Haddox-Wright is often running. When you have a child with a life-threatening disease, you’re often running on fumes, trying to keep up, making sure that your child is as safe as possible—and never too far that you can’t run as fast as you have to in case something happens.
Dana’s 5-year-old daughter, Ella, has something called Dravet Syndrome. It’s a very severe form of epilepsy, a debilitating, life-long condition marked by frequent seizures, poor seizure control, and developmental delays. Each seizure experienced by a child with Dravet syndrome carries a risk of sudden unexplained death, and there are many other associated health issues. Ella has to take several major medications that can impact her quality of life and the Wrights have put her on a very strict ketogenic diet as part of her treatment.
Ella’s seizures can be brought on by temperature fluctuations and excitement, something that’s hard to control for an active kindergartener. As a result, they have to accommodate life with lots of limits put in place. It creates a very stressful situation for the family of four, something that Dana talks about openly and very straightforwardly.
She’s actually pretty humble about what they cope with. Doing an interview with GOOD Morning Wilton just 24 hours after a seizure put Ella back in the emergency room, Dana is pretty calm talking about their life, even though Ella had been in very serious condition just the day before.
Dana once posted something on her personal Facebook page that describes what living with the daily worry is like for her and her family.
- I will never know what it’s like to be completely relaxed.
- I will never know my daughter off of some sort of medication.
- I will never get a full night’s sleep, and she will always require overnight monitoring.
- I will always need to know where all the hospitals are anytime we go somewhere. And most of the time, the thought of even taking a family trip induces a high amount of anxiety and a lot of prepping.
- I will never be able to allow my daughter to live as free of a life that she craves and deserves.
- I will always have to educate medical staff about Dravet Syndrome. Dravet moms usually know more about it than most doctors, and that includes what meds can actually make seizures worse.
- I will never be fully comfortable being away from my daughter.
- I will always feel guilty for a lot of things I can’t control. I have to say “no” a lot to my daughter and try to explain why she can’t do things that her sister can do. I have to explain to my youngest why we have to leave her with someone when my oldest gets rushed to the hospital.
- I will always have to know where my bra is (told you I couldn’t stay serious for long). I never know when I’ll have to leave the house in a hurry or by ambulance and I can’t be flippin’ and flopping all over the place. Also, having gum in my purse is a bonus….
- I will always be fighting to keep my daughter alive. A huge part of this involves making sure she has access to all possible effective forms of treatment, which the Dravet Syndrome Foundation is working tirelessly to fund research for.
But now, Dana is literally running for another reason. She’s registered for the Redding Road Race half-marathon on May 1, to raise both awareness about Dravet syndrome and funds for the Dravet Foundation. She’ll be accompanied by three other Wilton moms, including her friend Vivian Lee-Shiue, who first approached Dana with the idea of doing the Road Race.
“Vivian wanted to run and asked me if I’d be willing to train with her. I reluctantly said yes. Once I did, I knew I had to stick with it.” While she had been a runner when she was younger, it had been several years since Dana had done any running, let alone anything of this distance. “I never thought I’d get back into it.”
One way that Dana knew that she’d stay committed to training for and completing the half-marathon was to attach the fundraising component to it. Already a devoted fundraiser for the Dravet Foundation, she knew she would stick to the months of training and the 13-mile race by raising money for the Foundation.
Coincidentally, Vivian was thinking of doing the same thing before Dana even announced her plan. They set up a fundraising webpage and starting letting people know about it. Soon after, Jackie Shaw and Kimberly Pagan, two other Wilton moms who had also registered to run the half-marathon, said they wanted to be part of the team as well.
“I was never expecting other people to sign on but this is awesome,” says Dana. “I was very touched by it. It was something very unselfish of them to want to do it. They could do it for another thing, but for them to put their efforts into something close to me and my family, it meant a lot.”
The team name, “Ella’s Stinky Socks,” is sort of a funny one, thanks to Ella and her younger sister, 4-year old Clara, who helped come up with the name. As Dana explains, “I asked Ella, ‘If you could pick the name of the team, what would it be?’ Each time she kept suggesting variations on Ella: ‘Ella Maxine,’ ‘Ella Wright,’ and ‘Team Ella.’ Clara chimed in and said, ‘How about ‘Stinky Socks?’ Everyone got very excited about it. It was definitely a collaborative effort.”
Humor is something Dana and her family rely heavily upon. Both girls love to record videos of themselves doing silly things, and encourage mom to post the videos on her Facebook feed.
The race takes place at Redding’s New Pond Farm, a place of significance for Ella. The farm was the location of her first school field trip and her first time on a school bus—both risky things for someone with Dravet Syndrome, given that temperature changes and exertion can sometimes trigger a seizure. There’s one other thing that stuck out for Dana that made running a half-marathon so connected to why she and the others were running.
“I thought back to an E.R. doctor, when Ella had her first seizure, when we were first new to it. He was explaining the effect a seizure has on the body. He said a 5-10 minute seizure is the equivalent of running a marathon in terms of the effect on your body, because of what it does to your brain, the brain chemistry, your muscles and all of the systems in your body. It makes complete sense when you see how exhausted she is for the next couple days after a seizure. So for us to train for this half-marathon and run it, we go through just a little bit of what she goes through. When we’re exhausted after running this half-marathon, we’ll only be feeling it for a couple days. It really gives perspective.”
For a non-runner, someone who might just pack it in after attempting to run the first half-mile or mile, understanding that Ella has no option of ‘just packing it in’ when it comes to facing Dravet Syndrome makes her battle all the more poignant.
“When I first started training, everything started shaking, and you really get an awareness of how out of shape you are when you first start running. There were things jiggling,” Dana laughs. “I looked at my watch and I had only gone a quarter of a mile.”
But after about three weeks, she felt comfortable enough to start on the training program that Vivian had set up. Of course, the training has meant staying committed, not just to the physical part of increasing distances, but also making the time between work and parenting two young daughters, as well as the emotional commitment. Dana is always worried about being available 24/7 in case something happens to Ella. Even when Ella is at school, Dana can never let her guard down—what if something happens at school? What if Ella has a seizure?
“I never want to be more than two miles away from my car. Anytime that I’m running, I run faster toward my car. I have this sense of urgency, that I have to be there in case someone calls me.” The way Dana describes it is like it’s living with PTSD: “You’re always on edge, you’re always waiting for something bad to happen, even though you don’t want it to happen, you just have this foreboding feeling. It’s not an easy life.”
In fact, Dana says she doesn’t often have time for herself, once she’s done getting the kids ready for school, working, fixing Ella’s special diet, and being on call all the time. In many ways running has become therapeutic for Dana, a meditative way to get the nervous energy out. “Life is very regimented, and this adds some excitement,” she says.
Ella has been a big supporter of Dana’s training. “She always asks how far I’m running, and then I’ll hear from a teacher or aide, ‘I hear you’re running eight miles today!’ She’s talking about it at school, and both girls get excited and ask a lot about it when they see me in my running clothes.”
Dana is hopeful that Ella will be able to see her run during the race. “It depends on how she’s feeling. If she’s having a good day, or if it’s not too hot, she’ll be there.”
Another side benefit for Dana has been the development of her new friendships with her running teammates, especially Vivian.
“We share a similar sense of humor, we can be sarcastic and lowbrow,” Dana laughs. “We talk about how hungry we are after a run and send each other memes. She’s a great person to go through this with.”
Of course, anyone can donate online to Ella’s Stinky Socks team effort or donate directly to the Dravet Foundation. Learning more about Dravet and spreading awareness is just as good for Dana. One area she’s also been working on is advocating to get CT to pass a law allowing children with life-threatening diseases (like Dravet) to access medical marijuana.
She’s encouraged by how much more bi-partisan support the effort has gained this year, after being defeated last year. It recently passed the public health committee in Hartford and is moving on to the general assembly. “I feel much more positive this time around.”
For more information or to donate to Ella’s Stinky Socks effort, visit the team’s webpage.