Two years ago when Hailey Huntington was diagnosed with Dravet’s Syndrome, a rare and deadly form of epilepsy, it was a relief — relief because for 15 years her mother, Alexa Fila, had been trying to find the correct diagnosis for her daughter who was having violent seizures daily, sometimes as many as 50 in a single day. Correct diagnosis meant that the right course of treatment could be followed instead of the years of “try this” medication that often made things worse.
Now, Hailey, who will be 18 in November, is not just fighting to stay alive, she is actually beginning to live. While she will not outgrow the seizures, they are less violent, less frequent and less prolonged with the correct medication.
“She can do things now — it’s like she’s come out of a 15-year coma and it’s amazing that I am getting to know my daughter after 15 years of hospitals and seizures,” said Fila, 46.
Due to the uncontrollable seizures, Hailey had profound developmental delays and will always function like a 3-year-old. Now she is alert and responsive instead of lethargic and she’s like any other 3-year-old — curious, impulsive and fearless — and that poses a whole new set of problems.
“She’s alert and awake and she is capable of so much now,” said Fila. “If she isn’t in a wheelchair, she bolts away. She slips out of bed at night and explores outside.”
While the seizures happen less often, they are still unpredictable and Hailey is almost the same size as her petite mother.
“I know that she is capable of so much now, but often we have to stay home. It’s not safe if she has a seizure while we’re out because she is too big for me to manage alone along with the heavy wheelchair,” said Fila. “If she runs over to look at or follow something, she can’t get back to me on her own — she doesn’t know her address. She can’t say her last name. Like any 3-year-old, she doesn’t understand the dangers. Now that she can do things, it’s so sad to have to choose between keeping her safe and letting her have some fun.”
Hailey is able to attend school more regularly now that she has fewer seizures, and she is getting behavioral training from Alta Regional Center that she couldn’t have benefitted from previously.
Months ago, Fila visited the Pawsitive Service Dog Solutions in Olivehurst with Hailey. “When I saw that the dog could obey commands to go get something and bring it back and then it settled right there next to Hailey, I was blown away,” Fila said.
A Labrador retriever can be trained to alert to oncoming seizures, giving the people around Hailey precious time to ensure her safety, to fetch medication to control a seizure and bring it back to Fila, who can’t leave her daughter during a seizure. Tethered to Hailey, a dog will act as an anchor if Hailey tries to run away and can alert Fila if Hailey tries to leave the house at night or track her quickly if she gets away.
“We don’t have to be so limited,” said Fila, who has been her daughter’s only companion for 15 years. Two years ago, Fila’s mother, Tina Fila, 68, and her son, David Sterkin, 35, moved from New York to be with Fila and Hailey, and help, but Hailey hasn’t even been able to have a friend of her own, due to her seizures.
“A service dog would change our lives so much — I can’t even wrap my brain around it,” said Fila. “She could even sleep in her own bed if the dog was with her.”
Fila said she can’t find out all the things Hailey can do because it isn’t always safe to take her out. “She would love to walk on the bike trail. Maybe she would like to go shopping. The independence and freedom she could have with a service dog would be amazing,” Fila said.
A specially trained Pawsitive service dog costs $25,000, but they are charging only half that amount in Hailey’s case. Still $12,500 is a monumental amount for Fila whose constant care of Hailey prevents her from having a job. “Our application was accepted and Pawsitive sent us a fundraising packet. We opened a Website on Aug. 24. Already, we’ve been able to put a $1,500 deposit down and the community has responded with almost $3,200. I am just stunned by the response,” Fila said.
Fila has talked to community service groups and is waiting to hear from them. She has a Facebook page as well as the Website and flyers all over Placerville. When she reaches $7,200, Pawsitive will choose a dog for Hailey and begin scent training it.
“Protecting Hailey will be her dog’s job, its pleasure and its life. This amazing angel will be her constant companion … I simply cannot do this alone. This is the miracle we need — a service dog to help me keep Hailey safe, an angel with paws and wings,” said Fila.
To contribute to Hailey’s service dog account, visit the Website at tinyurl.com/HeroForHailey or Alexa Fila’s Facebook page.
Contact Wendy Schultz at 530 344-5069 or [email protected] Follow @wschultzMtDemo on Twitter.