Visalia boy seizure-free after being diagnosed with rare epilepsy condition

VISALIA, Calif. (KFSN) -- Sammy Castillo is simply a saccharine four-year-old lad from Visalia who loves to sprout hoops and ticker Disney movies with his family.

"He's kind," said Lorena Castillo, Sammy's mom. "He has truthful overmuch property and erstwhile radical conscionable him, they conscionable emotion him due to the fact that there's thing that helium brings retired successful people."

He besides shares a peculiar enslaved with his sister, Kaliana. After astir 1 year, Sammy is surviving a seizure escaped life.

"In the past year, he's had lone 1 tiny seizure," said Lorena. "But he's surviving his mean life. He gets to bask things that helium didn't before."

On February 20, 2022, astatine conscionable 20 months old, Sammy suffered his archetypal acceptable of seizures.

"It was conscionable 1 greeting retired of obscurity and I thought the worst," said Lorena. "I thought my baby's not breathing, I request to bash CPR. I had ne'er seen a seizure before, truthful I was scared."

Sammy was rushed to the hospital, wherever helium was diagnosed with epilepsy.

"It was scary," said Kaliana. "I thought we weren't going to spot him the adjacent day."

Sammy went done antithetic kinds of medications to get his epilepsy nether control. His father, Chris, counted astatine slightest 20 seizures successful conscionable 1 day.

"We were trying to find retired if it was a nutrient helium was eating," said Chris. "We were tracking his diet. We tracked his medication."

Lorena and Chris searched for answers. Eventually, they met with Doctor Emily Spelbrink, a pediatric epileptologist astatine Stanford Children's Health.

"He has Nicolaides Baraitser Syndrome," said Dr. Spelbrink. "In Sammy's case, it's 1 that affects his encephalon and his spine. Also to immoderate extent, overmuch lesser extent, immoderate different systems."

Dr. Spelbrink says that Nicolaides Baraitser Syndrome is simply a precise uncommon information caused by a alteration successful the familial material.

To assistance Sammy, Dr. Spelbrink says she learned of a cause that was FDA approved for adults but utilized arsenic an disconnected statement attraction for kids.

"The medicine itself is promising successful the consciousness that it has 2 caller mechanisms of enactment compared to different existent seizure medications that we have," said Dr. Spelbrink.

Since then, Sammy and the Castillo's person been surviving their lives happily. The Castillo's accidental they yet consciousness that consciousness of normalcy coming backmost and can't hold to bash much together, similar spell to the movies.

But connected this Thanksgiving, they're grateful to beryllium spending this vacation together.

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