There are three beds, a playpen and a crib in their Cloverdale home, but Buis, 24, has to stay close to 15-month-old Abby, in order to keep her alive. She stays awake as long as she can, listening for the sounds of Abby's next seizure.
Buis's sleepless nights began nine months ago, when her daughter, Abby Hilbert, had her first seizure and was rushed to the hospital. Doctors said the seizure, though dangerously prolonged, was fairly normal. A fever caused it, and Abby should be fine. The seizures didn't stop, and the next big one was worse, and lasted for six hours. She was life-lined to Indianapolis and almost died. Abby is not fine, she has Dravet's Syndrome.
"When they told us, I didn't know what to think," said Abby's father, Adrein Hilbert. "I thought they must be wrong." But the doctors were right, and the young parents were devastated.
Dravet's is a rare seizure disorder caused by a genetic mutation thought to affect less than 1 in every 40,000 children. The condition strikes quickly, and those affected by Dravet's appear healthy until they have their first seizure, usually before their first birthday. After they begin, seizures can grip the child daily. Most of these children experience significant developmental and cognitive delays. The mortality rate for Dravet's is a staggering 18 percent.
Abby has dozens of partial or focal seizures every day, and most are so slight they go unnoticed. But her mother never knows when one small twitch or slight fever will lead to the next massive convulsive seizure â€" the one that could end her life. A large number of Dravet's related deaths often occur when a child has a seizure unattended. Some parents rig up expensive video surveillance systems in their homes so their children are never out of sight. Ms. Buis does not have that luxury, so she never leaves her daughter's side.
Buis says she is plagued by the questions, "What if I don't hear her?" or "What if she's doing it right now?" As she paces the floor of her house, she says she feels like she's at war with her daughter's seizures, and with the help of family and friends, is searching for a new way to fight.
A four-legged alarm
Like many parents of Dravet's children, Buis and Hilbert searched the Internet for answers. They found specialized alarm mattresses that alert parents to nocturnal convulsive seizures. They have looked into specialized car window tinting that will help shield Abby's eyes from harsh light that can trigger another seizure. But, the most promising solution for Abby has four legs.
Service dogs can detect the small chemical changes that take place in the human body prior to seizure activity. These specially trained pets can alert their owners before a seizure strikes, they can retrieve medication and even dial 911. However, these animals are almost never placed with infants.
Nevertheless, Deb Terhune, Buis's friend and co-worker at Wal-Mart Distribution Center, went on a mission to help the family locate a service dog for Abby. After months of dead ends, waiting lists or service dogs that came with a $50,000 price tag, Terhune found Pawsibilities Unleashed in Lexington, Ky.
Pawsibilities founder Liz Norris takes a different approach to service dogs than typical trainers. Her not-for-profit operation only works with rescued dogs, not animals bred specifically to be human caretakers, which reduces the cost to only $1,500. She also believes that even though an infant is unable to give commands and bond to the animal the way an older child might, a service dog can still be a wonderful option for 15-month-old Abby.
"An infant may not be able to tell a dog to sit or roll over, but the two can still share a bond, and the dog can still do its job," said Norris. "These dogs can be relied on so parents can turn their back to cook dinner or make a simple phone call and not be afraid their child will have a seizure and they won't know. It is about the quality of life for the child and the entire family."
Family and friends at Wal-Mart have been on a fundraising spree to raise the money needed for a service dog and Abby's extensive medical bills, but the price is still out of reach.
"I hate to ask for money or appear needy," said Buis, "but it's not for me it's for Abby."
Abby's grandmother set up a website to encourage donations. Wal-Mart employees wear badges with Abby's picture, hold barbecues, drawings and penny wars to raise money for Abby's steadily growing fund. On Saturday, Nov. 3 from 11 a.m. to 7 p.m. the family is inviting the entire community to a bean dinner at the Greencastle Moose Lodge, hoping that the event will bring in enough money to take them to Lexington, where Abby has a dog waiting for her.
"Until then, I'll be her service dog," said Buis, who will continue to sleep on the floor and listen for sounds of trouble.
For more information about Abby or making a donation visit the family's web site at www.freewebs.com/abbysjourney. For information about Dravet's Syndrome or service animals visit www.bannergraphic.com.
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