Family hosting benefit for 3-year-old boy with rare condition - WNEM TV 5

Family hosting benefit for 3-year-old boy with rare condition

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(Source: WNEM) (Source: WNEM)

Carter Brown looks out his living room window, hoping to build a snowman, or sled down a hill.

“He goes to the door, and cries because he wants to play in the snow. Or he watches people out the front window playing on their bikes,” said Kelly Brown, Carter’s grandmother.

But the 3-year-old can't play outside, or do a lot of other things little boys like to do. Carter has a rare medical condition that keeps him inside, for the fear of a seizure ending his life.

When carter was 13 months old, he was diagnosed with Dravet Syndrome, a rare and severe form of epilepsy.

That's when he was placed into an induced coma, after a four hour seizure the doctors couldn't control.

Now, it's a condition he will have to control the rest of his life

“He doesn't understand and it's terrifying when he has a seizure, cause with Dravet, their lifespan isn't very long and most of them die from a seizure,” Brown said.

Carter has a very regulated life.

His body temperature has to be kept consistent, he can't easily leave the house.

And with little to no immune system, the slightest cold is catastrophic.

“He has to stay between like 70 and 72 degrees at all time,” Brown said.

But carter is still a 3 year-old boy, wanting to run and play.

This weekend, Carter's family is hosting a benefit to build Carter a therapy room at his home.

“So that he can have therapy here and room to run and play in, and feel like a little boy, because he can't run now,” Brown said. “His running is from the bedroom to here in the living room, that's it.”

So even though Carter can't ride a real horse, or go outside to play, his family wants to give the little boy a chance to have fun, and grow, like every other kid.

“You never know what life can bring, I guess,” Brown said. “We took everything for granted before, going outside, on vacation, camping, all those things we up and went, can't do that anymore.”

Anyone interested in attending the benefit to help build this therapy room for Carter can attend for free, with donations accepted.

It’s Sunday March 6 from 2-6 p.m. at the Masonic Temple on Miller Road in Swartz Creek.

There will be a raffle and spaghetti dinner.

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