Living with Dravet Syndrome
Posted: 08.17.2011 at 4:43 PM

OTTUMWA, IOWA -- One family fights to raise money for a rare disease.

Kim and Tyson Faoro’s three-year-old daughter Hannah has been diagnosed with Dravet Syndrome.  The form of Epilepsy can cause a child to have as many as 100 seizures in a single day.

“Hannah cannot sweat,” says her mother Kim.  “She has to have a cooling vest whenever she’s outside in the heat.”

Dravet Syndrome is cause from a mutation in the SCN1A gene.  Hannah received the Diphtheria Tetanus & Pertussis vaccine or DTaP for short when she was four months old. It was after the shot that she began to seize.

“Three to four hours later she had a seizure,” said Tyson.  “Then another three to four hours later she had another one.  They said it was related to the vaccination.  She had an allergic reaction.”

According to the Centers for Disease Control and Prevention, a serious allergic reaction happens in less than one in a million doses.  Tyson says this is why parents should test their children before vaccinating them.

“Anybody can have the gene.  That’s why they’re wanting to push for everybody getting tested because if you do have the gene then they may want to get your vaccinations later on when your mind’s not developing.”

The family will now hold “Dravet Syndrome Steps Toward a Cure” on Saturday October 8 at 9:30 a.m. at the Jimmy Jones Shelter in the Greater Ottumwa Park to raise money and awareness.

“There have been lots of children that have lost their lives to this,” Kim says.  “Right now we really want to raise awareness and raise money for research and medical supplies for these children.”

Kim says this will help people learn more about Dravet Syndrome and create awareness.

“Our main goal is to make sure that our daughter has the best life possible that we can give her.”

For more information or ways to donate click the links below.