Holding Hope for Annika

Annika Lewis is shy.

The 8-year-old hides her face behind a blanket, her big yet timid brown eyes beaming. Slowly, she lowers the blanket and reaches for an electronic toy lying on her living room floor, one designed to help toddlers learn the alphabet. She plays quietly for several minutes until, suddenly, she gets up and starts marching toward the kitchen without a word.

As Annika gets up, her father, Dan, notices a wet spot left on the hardwood floor.

It’s time to change Annika’s diaper. He also puts a helmet on her head in case she falls to the floor in a drop seizure — a far too common experience for Annika.

Annika suffers from Lennox-Gastaut Syndrome, a rare and severe form of epilepsy that affects people of all ages, but is typically diagnosed in childhood. The condition causes Annika to have daily seizures and mental dysfunction.

“When it strikes when you’re young, it affects your brain development,” Dan said. “Our 2-year-old speaks better than her.”

The majority of Annika’s seizures are mild, so mild that you’d hardly notice she was experiencing a fit. “She gets a blank look in her eyes and a sudden jerk. It takes her a couple seconds to come to again, ” Dan said.

However, Annika experiences drop seizures about once a week and was hospitalized last year for two and a half weeks after experiencing a prolonged seizure known as status epilepticus.

Rosanna and Dan Lewis said their daughter’s condition began with infantile spasms when she was only five months old. Her muscles would tighten and her head would involuntarily jerk. Annika began to experience these spasms daily and was officially diagnosed with epilepsy when she was 5.

At 8 years old, Annika stands at nearly 4-feet tall, just inches shorter than her 10-year-old brother, Brendan, but her brain functions at the level of her little sister, Peyton, her parents said.

Annika isn’t very communicative. She can’t read or write, but knows her colors and numbers. She can walk, run and swim while wearing water wings but also requires a wheelchair at times. She was potty-trained at one point, but regressed.

“But she’s always happy,” Dan said.

“We try to make her daily life as normal as possible,” Rosanna added.

A third grade student at Eastin Elementary School, Annika is enrolled in special education day classes and then spends part of the day with her grandmother, who relocated to Union City from Idaho to be closer to her grandchildren. She likes playing in the sandbox and watching her favorite TV show, “The Wiggles.”

“Sandboxes, water, bubbles — those are the things that make her happy,” Dan said.

Annika’s older brother, Brendan, also helps look after her.

“He grew up with it,” Rosanna said. “He’s grown up a little faster than other boys his age because we’ve given him more responsibility.”

But Annika will never have a “normal” life, and unless there’s a medical breakthrough, Annika may never be seizure-free.

Like other forms of epilepsy, there is no cure for LGS, which is why the Lewis family participates in the Epilepsy Awareness Stroll, an annual event that will be held at Six Flags Discovery Kingdom in Vallejo this Saturday ().

The event helps raise awareness and funds for research and resources to help families cope with epilepsy. Epilepsy affects one in 100 people and about 140,000 northern Californians, according to the Epilepsy Foundation of Northern California.

In the most extreme cases, epilepsy can even be fatal. Among the most noted incidents was when actor John Travolta’s 16-year-old son died of a seizure in 2009.

This is the sixth year in a row that the Lewis family — aka “The Incredibles” — will participate in the Epilepsy Awareness Stroll. So far, their team has raised close to $3,000 for epilepsy awareness.

The annual event was the only opportunity the Lewis family had to network with other families experiencing similar situations until last winter when they attended a support group in San Francisco organized by the LGS Foundation. There, they met two other families with LGS who have joined their team in this weekend’s Epilepsy Awareness Stroll.

In the past six years, Annika was the only girl participating with LGS, according to Rosanna.

“I think it’s great that we’ve found other families we can connect with,” Rosanna said. “We tried to reach out through the internet, trying to find support groups. The exact diagnosis was so rare, we couldn’t even find it online.”

But the Lewis family says they’re fortunate that Annika’s condition isn’t as extreme as others with LGS.

Rosanna said that researching LGS and epilepsy caused concerns about her daughter’s fate at first. She even searched for information on life expectancy rates.

“Nobody ever knows what’s going to happen,” she said. “It’s important to be as informed as possible but also to not be overwhelmed with the horror stories you see on the internet.”

Now, the Lewis family takes it one day at a time, basking in the moments they get to spend with Annika, who likes to curl into her mother’s arms, lets out a radiant smile when her father sings the “Hot Potato” song and wrestles with her brother whenever he’s in reach.

“[Annika’s condition] wasn’t easy to deal with,” Dan said. “But we don’t think about it any more. She’s just Annika now. We wouldn’t have her any other way.”

Help raise funds for epilepsy awareness by participating in the Epilepsy Awareness Stroll this Saturday at Six Flags Discovery Kingdom, or donate to the Lewis family team here.