ORIGINALLY WRITTEN DON RATZLAFF
What 4-year-old Dakota Funk wants as much anything is his own bedroom. He’s tired of having to sleep every night in Dad and Mom’s bed.
His parents, Stuart and Melissa Funk of Florence, would have granted his wish long ago-except for one thing.
They know that sooner more likely than later, Dakota would not survive the night without them at his side.
Because of a chemical imbalance in his brain, Dakota has suffered numerous and frequently life-threatening seizures since birth.
“It’s almost every day-not that we have to call the ambulance, but it’s what you get used to,” Melissa said.
At least a dozen times in Dakota’s short life, an ambulance has been required because his breathing stopped. His mother has administered “rescue breathing” on him numerous times; at least twice, she has performed cardiopulmonary resuscitation to restart his heart.
Seventy to 80 percent of Dakota’s seizures occur at night. Most are complex partial seizures, which are far less serious than the grand-mal variety.
Dakota sleeps in his parents’ bed because, without close physical contact with him, they would never otherwise know when a seizure strikes. Electronic monitors, helpful for addressing many other medical conditions, simply don’t work with children and seizures.
Stuart and Melissa said they have grown sensitive to the body twitches that signal the onset of a seizure, but they seldom sleep restfully.
“That’s my worst fear, that I won’t wake up if he has one,” Melissa said.
Now, for the first time since Dakota’s birth, the Funks have tangible hope that their youngest child’s wish-and theirs, too-can come true.
If all goes according to plan, this fall “man’s best friend” will become this family’s best lifesaver. The Funks have been accepted for the placement of a seizure response/alert dog through the Great Plains Assistance Dogs Foundation in Jud, N.D.
Professionally trained assistance dogs have long been a help for people with sight, mobility, hearing or social impairments, but seizure response/alert dogs started picking up momentum less than a decade ago.
The dogs, usually labradors or German shepherds, are trained to respond either with a vocal (barking) or physical-contact alert, or by activating an emergency medical device once they sense the onset of a seizure. The dogs can sense the onset of a seizure up to an hour before it hits.
“They think the dog senses some kind of chemical change, a smell in the body,” Melissa said.
The Funks said they have noticed the same rudimentary ability in their own dog, a fox terrier.
“She gets real antsy,” Melissa said. “She’ll cuddle up to (Dakota), and then get away from him. But little dogs are too hyper to be able to train (to respond appropriately).”
“The biggest thing Dakota wants is being in his own room,” Stuart said. “We can have the dog trained to actually bark or to come in and nudge us in bed when it senses a seizure coming.”
* * *
A private bedroom may seem like a small achievement in most families. But in this one, it is an extraordinary luxury in a world of extraordinary stresses and challenges.
Melissa and Stuart were married in California, where he was stationed for military duty. She brought two children, Kiera and Travis, to the marriage and soon the couple were ready to add more.
Galen, who will turn 8 in April, came first. He was joined almost two years later by Angel-Lynn. Dakota was born June 2, 1996.
All three of the youngest children have encountered major health problems. They have been diagnosed with Attention Deficit Hyperactivity Disorder, Restless Leg Syndrome and have impaired glucose tolerance, which will turn into diabetes when they get older.
All three children also are prone to seizures, though Galen’s and Angel’s episodes are controlled for the most part with medication. Galen had open-heart surgery when he was 2.
“There’s never a dull moment in my house,” Melissa said with a smile.
Dakota began having seizures soon after his birth, but doctors in California thought it was Restless Leg Syndrome, which is a geriatric disease.
In 1998, the family moved to Kansas and eventually made their home in Florence, where Stuart is the city superintendent. Soon after, Dwight Lindholm, a neurologist in Wichita, finally diagnosed the children’s problem as seizures.
On Labor Day that year, Dakota had his first grand-mal seizure. He stopped breathing and his heart went into arrest.
“Usually, with seizures, if they stop breathing, they start again on their own-but he wasn’t,” Melissa said.
That day marked the first of many emergency ambulance calls for the Funks, and a new way to structure their lives to meet Dakota’s significant needs.
“Anyone who watches him has to have CPR training,” Melissa said. “All his paras and teachers at Head Start in Florence had had CPR. He has medication that, if his seizures last longer than two minutes, or if he has more than three in an hour, they administer it.”
A few extended-family members, including Melissa’s parents, and close neighbors are qualified to perform CPR if necessary.
Melissa’s oldest son, Travis, lives with his father in Missouri. But Kiera has assumed responsibilities beyond her years. Now 16, she has never had to perform CPR or rescue breathing on Dakota, but she is constantly alert for seizures when she is home with him.
“It’s really stressful when we have to take (Dakota) to the hospital,” Stuart said. “It means someone has to be with him, so then all the duties fall on me-with Kiera’s help. She is super.”
Galen and Angel have experienced and witnessed their share of crises, too. Once, while Melissa, Dakota and Angel were driving to Marion, Dakota suffered a seizure.
Noticing that his breathing had stopped, Melissa quickly pulled the vehicle to a precarious stop along U.S. Highway 77. She grabbed her son out of his seat belt and began to administer rescue breathing.
“I got him breathing again and called 911 on my cell phone,” she said. “Then he stopped breathing again. I had to give the phone to Angel and I told her, ‘When the lady comes back on, tell her I’ll be right back-I had to start breathing for Dakota again.'”
Angel, then 5, did her best.
“When the lady came back on, Angel goes, ‘My mommy is breathing for my brother,'” Melissa remembered with a chuckle. “It was kind of hilarious.”
* * *
Finding humor in the midst of crisis has been an important coping tool for the Funks.
“It’s really stressful when we have to take Dakota to the hospital,” Stuart said.
“After I get into the hospital and he’s stabilized, that’s when I fall apart,” she said.
Because of the intensity of the health challenges facing their family, Stuart and Melissa have been exposed to the health-care system far more than most couples have. Their datebooks are filled with notations about doctor appointments, medications and emergency procedures.
The medical specialists they’ve found in Newton and Wichita have been a godsend. But not all of their experiences with health-care institutions have been positive.
“I think the hardest part for me is running into people that I have to convince,” Melissa said. “A lot of them have been in the medical profession.”
In one case, a nurse refused to administer Dakota’s medication without a doctor’s authority-even though Melissa insisted, from her experience, that it be done.
“Dakota had a prescription for the rectal diastat that I had given to the nurse to keep instead of keeping it in Dakota’s room,” Melissa said.
She wanted Dakota to receive the diastat through his I.V. so the dose could be smaller at the start. Melissa even offered to administer the medication herself, since it was already prescribed. Still, the nurse refused.
“He seized for 17 minutes before I finally got it and was able to give it to him,” Melissa said. “It is really scary when you are in that situation and you know what needs to be done, but you have to convince a health-care professional because in their mind it’s only a seizure if the person is convulsing wildly.”
The seizure turned out to be Dakota’s longest. It wore him out it so badly that the next day he couldn’t support his own weight on his legs. It took a week before he regained all his motor skills.
In addition to occasional run-ins with medical personnel, the cost of medication is outrageous-about $2,000 a month for the youngest children-not to mention related “hidden” expenses, like trips to the doctor. Insurance and Medicaid have prevented the Funks from drowning financially.
Through all the trials, the Funks remain upbeat. In a real sense, their situation has become “normal” life.
Even so, it’s not always easy. When the going gets tough, they said they find strength in three sources: God, their close-knit community, and especially each other.
“It just seems that when one of us gets down, the other one is there to pick the other one up,” Stuart said.
“I almost think it’s harder on the kids,” he added. “They see that Dakota gets a little extra attention once in a while. He’s gotten a ride in an ambulance and people have come to his side. That hasn’t happened to them-it’s a lucky thing, but they don’t see it that way right now.”
Though Dakota has known no other way of life, he experiences tough times, too.
“Not being able to have as much freedom as Angel and Galen, not being able to just go play in the neighbor’s backyard, not being able to go and take off somewhere with his big sister-that’s tough on him sometimes,” Melissa said.
* * *
An acquaintance first mentioned the notion of assistance dogs for children with seizures. Intrigued, Melissa, eventually found Great Plains Assistance Dogs Foundation on the Internet.
The Funks sent in a pre-application first. After that was approved, they filled out the formal papers.
“They wanted to wait until Dakota was 5 because they figured by then children can reason and understand the commands, and why they have to give the dog the commands they give,” Melissa said.
Placement was approved and is scheduled for fall. When the time comes, Stuart, Melissa and Dakota will travel to Jud for two or three weeks of orientation and training before returning to Florence.
More freedom is the biggest thing a seizure alert/response dog will bring to the Funk household. Because the dog will be Dakota’s constant companion, Melissa and Stuart won’t have to maintain the close vigil they have now.
“I won’t be quite as worried sending him to school,” Melissa said. “It will give the kids some things that other kids just take for granted, like being able to go to the park when they want to.”
“I think it will ease up some of the tension and give us a little more freedom,” Stuart added. “It will give us our bedroom back, too.”
But freedom comes with a price. In this case, the price is $12,500, which is Great Plains’ estimated cost for training, placing and following up one of their assistance dogs.
Great Plains won’t withhold placement if the funds aren’t raised by fall, but the Funks are determined to raise all of the funds anyway.
“I don’t want to take money away from someone else who might not have a supportive community like ours,” Melissa said.
The Funks have established a formal fund through their home congregation, Cedar Point Community Church. They also have a Web site where friends and other interested folks can keep up with the latest news about Dakota and the family.
For some time already, neighbors and friends in Florence and the surrounding area have asked to help. What the Funks said they need as much as donations are ideas about organizing effective fund-raisers-for now and the foreseeable future.
“I don’t want this to stop once we get the money for our dog,” Melissa said. “I would like to see the community continue to contribute, even if it’s not much. Anything they give is going to help someone else be placed with a dog.”
* * *
Even with an assistance dog, the Funks know they will always live some uncertainty in their home. But they cling to hope-and each other.
“A lot of children who have seizures grow out of them,” Melissa said. “We’re still hopeful. We never say never, but we know our kids probably won’t. Galen’s 7 and he still has them.”
“But I still wouldn’t trade my family and my wife for anything else,” Stuart said with a smile. “I feel a little blessed because none of them are terminal-my child is not in a hospital knowing his time is running out.”
Melissa echoed the sentiment.
“We have three children with major medical problems, but I
wouldn’t trade them for three healthy children,” she said. “And I wouldn’t go back if I had a choice and change a thing.”