She's going to Disney World

By NICK NARIGON

From left, Rita Michalek, Niah Koenig, Nevaeh Mobley and Quentin Koenig are prepared for a vacation to Disney World courtesy of the Make A Wish Foundation.

For her eighth birthday, Nevaeh Mobley was granted one wish.

Neveah, who turns 8 Sept. 9, is going to Disney World with her family courtesy of the Make A Wish Foundation.

The third grader at Iowa Valley High School has lived with congenital muscular dystrophy her entire life.

Her mother and step-father, Niah and Quentin Koenig, wanted to send Nevaeh to Disney World for her birthday, and began saving over a year ago, collecting change and small bills in a large, purple crayon-shaped bank.

“My thought is everybody should experience Disney at least once in their life,” said Niah. “This will be bliss for her. She will have so much fun. This is something she will certainly thoroughly enjoy. We could have made it happen, but it would have been a stretch.”

Last spring a former co-worker of Niah’s suggested they apply for the Make A Wish Foundation. Niah went to their Web site and went ahead and applied, not sure what to expect. If anything, she figured it would take a few months to hear a reply.

She received a phone call the very next day.

By Memorial Day, volunteers with Make A Wish visited the Koenig’s home, and it was a go.

“It was a very pain free process. It was so easy,” said Niah. “The volunteers have been absolutely amazing.”

The Koenigs, along with Nevaeh’s grandmother, Rita Michalek, leave Thursday, Sept. 10 for Orlando, Fla., to spend a week at Disney World.

The plane tickets are free. They will stay at the Give Kids the World Resort in a two bedroom, two bathroom suite, with a washer, dryer and kitchen.

They received a three-day park hopper pass, which includes access to Disney’s Magic Kingdom, Epcot Center, Disney MGM and Sea World. They also received a two-day pass to Universal Studios.

“For me, it’s just to make her happy, let her enjoy herself,” said Niah.

Along with the trip itinerary, the volunteers provided a box of goodies for Nevaeh, including snacks and juice, coloring books, T-shirts, pins, a backpack, sunscreen, photo album, etc. The Koenigs also received an expense check of $1,750.

MUSCULAR DYSTROPHY

When Nevaeh was born, she was a healthy baby. She was able to crawl and sit up. Then when she was three months old, she started having seizures, and her development stopped.

For five years, doctors could not figure out what was wrong with her. Then two years ago she was diagnosed with congenital muscular dystrophy.

As it turns out, Niah and Nevaeh’s biological father have a recessive gene for muscular dystrophy. Niah said 1 in 100,000 children have Nevaeh’s condition.

Muscular dystrophy is a group of disorders that involve muscle weakness and loss of muscle tissue that get worse over time.

There are no known cures for muscular dystrophy. The goal of treatment is to control symptoms.

Nevaeh has muscle, brain and eye disease. The effects of all three cause her to have epilepsy and seizure disorder.

The heart and lungs are also muscles, which means they will deteriorate over time, and eventually cause death.

Quentin said Neveah has been given anywhere from two to 12 years to live.

“It just depends on what happens,” he said.

Niah said Neveah’s health has leveled out. For three years, the little girl weighed 25 pounds. Then she had a feeding tube implanted that helps her eat.

Neveah has put on weight and has stayed healthy.

“This has been a good year,” said Rita, who is Neveah’s daily companion and caregiver.

IOWA VALLEY

The family lived in the Norway area, and Neveah began school in the Benton Community School District. But as her condition worsened, the Koenig’s two-story farmhouse was not ideal in which to raise a child with special needs.

A little over a year ago they moved to a single story home south of Marengo. Niah said there are only two steps to get into the house, and the garage is attached, making it easier to get Nevaeh into the family van.

Nevaeh began at Iowa Valley Elementary School last year as a second grader. Niah said Nevaeh loves the school, and all of the other kids have been very good with her, some even promising to protect Nevaeh and teach her about dinosaurs.

Nevaeh loves music, playing catch with a ball, being read to and going for walks. Most of all, she loves swimming, said Niah.

“She also likes to sit back and watch kids play,” she said. “She likes kids and she likes attention from her peers.”

Niah is a social services designee for Belle Plaine Nursing and Rehab Center and Quentin owns Koenig Trucking and works construction.

Rita said the trip to Disney World is perfect for Nevaeh. She said Nevaeh loved visiting the zoo and loves to be around other people and anything exciting.

“This is Nevaeh. She never dwells on the past. She never worries about the future. She is completely in the present,” Rita said. “When Nevaeh smiles, you can’t help but smile.”

UPDATED September 9, 2009 10:15 AM