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Archive for Wednesday, April 12, 2006

Trip adds some sunshine to kindergartner’s life

April 12, 2006

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Josh Evans' week in Florida flew by. But for the boy's family, the week will last a lifetime.

"This is something we're always going to hang on to," Josh's mom, Tareena Evans, said.

Josh's experience along the Florida coast was much like any other 5-year-old's. Plenty of Mickey Mouse and Goofy, plenty of sugar highs and running wild - a needed break from the rigors of Langston Hughes School in Lawrence.

But Josh isn't like every other kid. Born with Roberts syndrome, a rare genetic disorder that disrupts bone development, Josh has spent his young life unable to do many of the things typical kids do - either because of his abilities, or because of people's perceptions of him.

But for one spring week, a Kansas City charity gave Josh and his family a chance to be a regular kid, something the boy has never had before - replacing, if only for a time, a life of hardships and sacrifice.

Wish granted

On this day, Linda Browning stands at the head of Josh's kindergarten class, showing her students how to draw a pie.

At first, the image on the board looks like a crown, or some kind of rock. But the kids don't seem confused.

Josh Evans sits at a half-circle desk surrounded by other kids. He rests his left foot on a footstool that matches his neon green shirt.


Josh Evans didn't have any problem getting back into the swing of things at Langston Hughes School. The kindergarten student listened Tuesday to his teacher Linda Browning, right, as she read cards welcoming Josh back after his trip to Disney World, courtesy of the Dream Factory of Greater Kansas City. Josh has a genetic disorder that affects his bone development.

Josh Evans didn't have any problem getting back into the swing of things at Langston Hughes School. The kindergarten student listened Tuesday to his teacher Linda Browning, right, as she read cards welcoming Josh back after his trip to Disney World, courtesy of the Dream Factory of Greater Kansas City. Josh has a genetic disorder that affects his bone development.

"Are you ready, Josh?" Browning asks.

Josh lifts his pencil in the air, and Browning tells the students to draw what's she's drawn.

Heads down, the kids all draw the crown/pie crust, except for Josh. Josh's assistant in the class, a paraprofessional who helps with everything the boy does, draws first.

Then, on a clipboard hiked up at an angle, Josh traces. The rest of the class is already done.

This is the life of Josh Evans. Standing up from the table, he's a foot shorter than some of the other kids in the class. When the kindergartners walk to the music room, Josh rolls in his wheelchair.

"There are a lot of things he can't do," Tareena says. "When he gets frustrated, he asks me, 'Why can't I do this like everybody else?'"

But last year - his first year in school - Josh's bus driver had a friend who volunteered at the Dream Factory of Greater Kansas City. He told Tareena that she should apply for the Florida trip.

Tareena is a single mother of four, and two of her kids have disabilities. Vacations being rare, she decided to apply.

Then, in January, she heard from the organization; the Dream Factory not only granted Josh's wish but made him the poster boy for the organization.

"It was the talk around the dinner table for months," Tareena says.

Hard times

Before the trip, the talk around the Evans home still focused on Josh, but there was little smiling, little playing, little of the joy of being a kid.


Josh Evans listens to his kindergarten teacher, Linda Browning, at Langston Hughes School. Joshua returned to school Tuesday after a trip to Disney World in Florida.

Josh Evans listens to his kindergarten teacher, Linda Browning, at Langston Hughes School. Joshua returned to school Tuesday after a trip to Disney World in Florida.

"With Josh, we've all had to learn to adapt," she says.

Two head surgeries kept him in a hospital bed for weeks. More than one of Tareena's jobs disappeared as she comforted her son in a hospital room.

But when word from the Dream Factory came, life for the Evanses changed. Suddenly, her kids buzzed with excitement, Josh included.

"Every morning, it was, 'When are we going to go?'" Tareena says.

When the family arrived there, Josh walked into a new world. He was suddenly riding and posing for pictures on the back of Harley-Davidson motorcycles, the poster boy for the Dream Factory.

NBC's "Today" show arrived unexpectedly, filming a segment about Josh. The segment should air April 20.

The Dream Factory prize also included a trip to Disney World - a place that can still amaze a 5-year-old.

But for Tareena, the experience amazed, too.


Joshua Evans didn't have any problem getting back into the swing of things at Langston Hughes Elementary school Tuesday as the kindergarten student puts up some pictures from show-and-tell.

Joshua Evans didn't have any problem getting back into the swing of things at Langston Hughes Elementary school Tuesday as the kindergarten student puts up some pictures from show-and-tell.

"When we got down there, they let him ride everything," she says. "Even the county fair won't let him ride the kids' rides."

And for once, Josh's mom watched her son live the life of everyone else - no special teachers, no footstools, just running and laughing wide-eyed at the world.

"It was a chance to see my son treated like an actual 5-year-old," she says, "instead of someone with a disability."

Josh's world

Standing in a vacant classroom at Langston Hughes, Josh flips through photos of his trip to Florida.

When he's done with each picture, he holds it out and drops it on the ground in front of him. He loves the images, but without knees or elbows, he strains to put the pictures down carefully.

But the boy can't stop smiling. One by one, he describes everything in every image.

"This is me, my mom, my sister, Goofy :" he says as the picture tumbles to the floor.

He speaks almost from memory, outlining every detail of his whirlwind week.

The motorcycle ride: "It went superfast," he says.

The roller coaster: "I got my picture taken there."

All of the attention: "My mom's going to see me on TV. And my grandpa!"

No one knows how long Josh will live. Life expectancy varies widely for children with Roberts syndrome, according to medical reports.

But now, the boy acts vibrantly. Standing with his photos, he chats away about everything that he's seen and done.

For Tareena, it was a chance to see her son act like a child. For his sisters, they spent the kind of time with their brother they may not have again.

Josh's life has been a journey of sacrifice for his family. Lost jobs, lost time, lost opportunities.

"We've all had to give up something we've wanted," Tareena says.

But for one week in the Sunshine State, the whole world belonged to Josh.

Comments

KSChick1 8 years, 8 months ago

Love this story, and am so sorry for the adversities you must face.

Raider 8 years, 8 months ago

Wow. This should make the rest of us stop for a moment and be thankful for what we have. This is an incredible story.

Celeste Plitz 8 years, 8 months ago

I'm so glad they had so much fun. :-) They'll remember that for the rest of their lives. Great story!

coolmom 8 years, 8 months ago

what an awesome family. kudos to the dream factory.

Zyland 8 years, 8 months ago

Glad you got some fun going on a vacation Treena. Glad to see Josh still smiling. Did your other son (won't mention name w/o permission) get to take part in the festivities as well? I'm sure he would have loved it. ^^ It was always fun playing with Josh and Cameron when they were in mom's daycare.

-The computer geek that kept to the back, though came out to play with the kids often

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