A long, slow hug marked a turning point in two mothers’ lives — a hug that had been 15 years in the making. While their daughters, 15-year-old Hailey Huntington and almost-15-year-old Marissa Hunt, curled up on the Hunts’ couch with an iPad, Alex Fila, 44, and Ginny Hunt, 48, talked about medications, seizures and the Mountain Democrat article that brought them together.
Ever since Marissa’s first grand mal seizure when she was 6 months old, Ginny Hunt had been looking for the answers to what was happening to her daughter.
“Sometimes her seizures would last for as long as an hour and they were almost constant,” said Hunt. “The staff at Marshall Hospital knew us well and even kept a kit ready for Marissa. They would stabilize her and then Lifeflight her to other hospitals.”
Years went by. Hunt, a home health nurse with three older boys, now had only one patient — her daughter. Her other friends with handicapped children didn’t understand. They had a diagnosis, but Hunt just had questions.
On July 26 an article by interning reporter Jessica Pratt, about Hailey Huntington being diagnosed with Dravet syndrome, a rare form of epilepsy, appeared in the Mountain Democrat. Fila’s long search for Hailey’s diagnosis had come from a post she’d read on the Epilepsy Foundation Website.
A friend who read the newspaper article e-mailed the link to Hunt, thinking that the description of the syndrome sounded like Marissa. Later that day, Hunt, who does not subscribe to the Democrat, came across a copy of the article. Then, when she was dropping off a job application for one of her sons at an apartment complex, the manager noticed Marissa waiting in the car and told Hunt that Alexa Fila and Hailey had lived in the complex. She knew all about the difficulty Fila and her daughter had experienced for years.
“Those three things all on the same day were like a message from God,” said Hunt. She called the University of California San Francisco Medical Center to request genetic testing for Dravet, but received no response. She called again, and again received no response.
“Our insurance was going to expire at the end of September, and we needed to get the testing done,” said Hunt. The Monday before her insurance expired, Hunt and Marissa met with their neurologist and Hunt was finally able to get a response. The test was run and came back positive for Dravet, just before the insurance expired.
“The neurologist apologized and said he didn’t know why it hadn’t clicked with him earlier that she might have Dravet,” said Hunt. “He runs a Dravet support group in San Francisco.
“It’s not going to cure her, but we got some answers that morning,” said Hunt. “We know now which medications are helpful for her and which ones make things worse.”
Now Marissa is on a new medication and Hunt is waiting for her to stabilize. Hope is part of their lives again.
Another change has been that Hunt no longer feels alone in her care for her daughter. “Before, when I would call UCSF, nothing would happen, but now I’m in touch with a great nurse there who knows all about Dravet. My questions are being answered immediately.”
Hunt contacted Hailey’s mother, Alexa Fila. The two found that they live less than two miles from each other.
“We’ve talked on the phone and online. She’s also got me into some parent support groups online,” said Hunt. “It’s amazing. She totally gets what I’m dealing with. She understands the fear I have that a seizure could cause sudden death. It’s hard to talk about this to family and friends without appearing to want pity or making them sad, but Alexa gets it.”
Later, in the Hunt living room, the mothers discussed the journey, including the horrible side effects of some of the medications — the “angry” drug, the one that makes hair fall out or causes severe vomiting. They talked about how they scrutinized every detail of their pregnancy and lives to find out what had happened or what was to blame.
“We tried the ketogenic diet when Marissa was 4,” said Hunt.
“We tried it when Hailey was 22 months,” said Fila. ”How many times did you hear, ‘Well it can’t make her worse?’ Well, some things can.”
Perhaps the saddest thing the two mothers share is the length of time it took before a diagnosis was given and the fight each of them had to put up to get the genetic testing done. With only 600 internationally confirmed cases of Dravet syndrome, many doctors are unfamiliar with the disease and genetic testing is expensive.
“This is the reason we did the story for the newspaper,” said Fila. “I prayed and prayed that someone would read it and they wouldn’t have to go through so many years before they found out what was wrong with their baby.”
“Now there’s two of us,” said Hunt. “I’m still in shock, but we have a new family now.”
“Don’t ever stop searching for the answers,” said Fila.
For more information about Dravet syndrome, visit dravetfoundation.org.
E-mail Wendy Schultz at firstname.lastname@example.org or call 530-344-5068.