Vivian parents share struggle with daughter's seizure disorder - KSLA News 12 Shreveport, Louisiana News Weather & Sports

Emma's Journey: Vivian parents share struggle with daughter's seizure disorder


The parents of a 14-month-old Vivian girl who suffers from a rare seizure disorder are sharing their story, and hoping surgery will bring relief for their daughter.

Infantile spasms is a mild-sounding diagnosis belies a condition that can truly be life-altering.

Emma's mother Kristal Festavan says there were no warning signs during her uneventful and healthy pregnancy and her first few months after birth. But when Emma turned 5 months old, they began noticing the twitches. Now, she experiences them daily, usually at night.

According to the National Institutes of Health, the condition, also known as West Syndrome, typically shows up between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs.

Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, which is why doctors say it is important to identify the cause in order to determine the best treatment.

There are medicines that, in very select situations, can control the spasms and they usually stop by the age of 5. But even if 100% controlled, children can still become developmentally delayed or suffer more seizures later on.

Festavan says Emma's worries she's already falling behind "She's already behind a lot of her milestones now.  Not too bad, she's 14 months old and she's on a 10-11 month old in her development."

Now, her mother says she's putting it all in God's hands, and a team of expert neurosurgeons. "And I just really have faith in God that he's going to take care of her."

Emma is going to undergo surgery to remove the part of her brain where the seizures are happening. "She has a focal area in the brain, abnormally formed, explains LSU Hospital neurosurgeon Dr. Arun Kalra. "Take it out and the spasms will stop."

"It started in the right front horn of her brain. Now it's the whole right side of her brain (that) seizes," says Festavan. "Now as long as we get it before the age of 2, we can remove those area of her brain and the brain will re-grow."

Surgery is not an option in every case. Dr. Kalra says if the spasms had started on the left side of Emma's brain, surgery would likely be off the table.

While it's naturally a scary prospect, Festavan is focusing on the hope for the best possible outcome. "I'm really looking forward to her saying momma when I walk in the room."

Emma and her parents will leave for Detroit this weekend, where a leading neurosurgeon in the field of infantile spasms will handle Emma's surgery.

Friends and family are trying to raise money to help them with the expenses of travel, food and lodging for an estimated 3 weeks. They say her parents could be off work for 3 months or more while Emma recovers.

For those who would like to donate, an account has been set up for Emma at first Guaranty Bank in Vivian, or click here to donate online to Emma's Journey.

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