Friday, July 25, 2014
PLACERVILLE, CALIFORNIA
99 CENTS

Chain of knowledge helps local moms

HAILEY HUNTINGTON, 15, left, and Marissa Hunt, 14, share an iPad Wednesday.  Both girls suffer from a rare form of epilepsy called Dravet Syndrome. A story last summer in the Mountain Democrat helped bring the teens' moms together.Democrat photo by Pat Dollins

By
From page A1 | November 21, 2011 |

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 wschultz@mtdemocrat.net or call 530-344-5068.

Comments

comments

.

News

 
Scaffolding issue makes for contentious meeting

By Wendy Schultz | From Page: A1, 2 Comments | Gallery

 
District 2: Candidates debate jobs versus lifestyle

By Dawn Hodson | From Page: A1, 2 Comments | Gallery

Accident: 1 bullet hits 2

By Cole Mayer | From Page: A1

 
Help available for breastfeeding mothers

By Health and Human Services Agency | From Page: A3

 
El Dorado County School Board vacancy

By El Dorado County Office of Education | From Page: A8

 
.

Opinion

The weekly Daley: A good time to be there…

By Chris Daley | From Page: A4

 
Something to think about: More than what you see

By Wendy Schultz | From Page: A4

Popular science

By Mountain Democrat | From Page: A4

 
.

Letters

Watch whom you’re calling ‘conservative’

By Letters to the Editor | From Page: A5Comments are off for this post

 
Fake ‘small farms’ steal from residential EID customers

By Letters to the Editor | From Page: A5Comments are off for this post

People of Placerville

By Letters to the Editor | From Page: A5

 
Computer scam phone calls

By Letters to the Editor | From Page: A5

Support of Director Prada

By Letters to the Editor | From Page: A5

 
Uphold the Third Amendment

By Letters to the Editor | From Page: A5

Bureaucracy

By Letters to the Editor | From Page: A5, 1 Comment

 
Imagination Theater’s play

By Letters to the Editor | From Page: A5

.

Sports

Midget Lites join tomorrow’s action

By Bill Sullivan | From Page: A6

 
El Dorado rallies for last-inning victory

By Mike Bush | From Page: A6

Sports Scene: July 24, 2014

By Democrat Staff | From Page: A6

 
Quarter century later, Rypien wins ACCG again

By Andrew Hazard | From Page: A6 | Gallery

Outside with Charlie: Paddle time

By Charlie Ferris | From Page: A6

 
Rush sit a win from Series

By Jerry Heinzer | From Page: A7

Tasmanian Devils go undefeated

By Patty Pope | From Page: A7

 
.

Prospecting

El Dorado wines win in Amador

By Democrat Staff | From Page: B1

 
Things to do: July 25, 2014

By Democrat Calendar | From Page: B2

Suds entice the taste buds

By Krysten Kellum | From Page: B2 | Gallery

 
Rhythm and Views goes bluesy

By | From Page: B3

Have an Hawaiian vacation at Carson Road wineries

By Carson Road Winery Asociation | From Page: B3Comments are off for this post | Gallery

 
Summer fun is happening in Twain Harte

By Fire On | From Page: B4Comments are off for this post

Manzanita doubles the music

By Table Nectar And Manzanita | From Page: B5

 
Hands4Hope hosts school supply drive

By News Release | From Page: B6

Supergroup plays Harris Center

By Carrera Productions | From Page: B6

 
Recording artist at Busby Cellars

By News Release | From Page: B6

Artists invited to go western

By Art On The Divide | From Page: B7

 
Visit Tahoe artists during tour

By Special to the Democrat | From Page: B7

Reggae on the River celebrates 30 years

By Reggae On | From Page: B7Comments are off for this post

 
.

Essentials

Lake levels 7-24-14

By Michael Raffety | From Page: A2

 
Crime Log: July 11-13

By Cole Mayer | From Page: A2

Building permits 7/7-11/2014

By Michael Raffety | From Page: A2

 
.

Obituaries

Wallace Murrel Thomas

By Contributor | From Page: A2

 
.

Real Estate

How to have a garden party, minus the whining

By Marni Jameson | From Page: HS3

 
Most common mistakes homebuyers make

By Ken Calhoon | From Page: HS4

.

Comics

Shoe

By Contributor | From Page: A9

 
Sudoku

By Contributor | From Page: A9

Rubes

By Contributor | From Page: A9

 
TV Listings

By Contributor | From Page: A9

Speed Bump

By Contributor | From Page: A9

 
Tundra

By Contributor | From Page: A9

Working It Out

By Contributor | From Page: A9

 
New York Times Crossword

By Contributor | From Page: A10

Horoscope, Sunday, July 27, 2014

By Contributor | From Page: A10

 
Horoscope, Saturday, July 26, 2014

By Contributor | From Page: A10

Horoscope, Friday, July 25, 2014

By Contributor | From Page: A10

 
.

Home Source

How to have a garden party, minus the whining

By Marni Jameson | From Page: HS3

Most common mistakes homebuyers make

By Ken Calhoon | From Page: HS4