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Photo by: Tim Freed - The Loewen family relocated to Central Florida to give back to the organization that helped their sick son forget his illness for a week.
Winter Park / Maitland Observer Thursday, Oct. 31, 2013 4 years ago

Family helps Give Kids the World

Family gives back
by: Tim Freed Associate Editor

Even in the darkest of times when all seems lost, a single moment of happiness can lead to hope.

Winter Garden resident Brad Loewen sees it every week. On a Friday night just before 9 p.m., the tall man in the glasses peers over a glass display case filled with ice cream flavors, looking down at a young boy with reddish hair and freckles. The boy presses his hands against the glass and looks over the 15 flavors before pointing to the tub of pink ice cream.

Brad holds the cone close to his ear like the receiver of an old-fashioned candlestick phone.

“Strawberry?” he asked.

The young boy smiles and nods.

Brad makes sure to cram as much ice cream into the cone as possible, pressing down with his ice cream scooper. He tops off the pink scoop with some whipped cream, which quickly finds its way onto the smiling boy’s nose.

The families that enter the ice cream parlor come from around the world, from Great Britain and the United States to Kuwait and Argentina. But each of these families have something in common: a child with a life-threatening illness.

Brad and his family share their time and passion every week volunteering at Give Kids the World, a nonprofit organization in Kissimmee that gives children with life-threatening illnesses and their families a free, weeklong vacation at their resort and surrounding theme parks in Orlando.

It all starts when eligible families are referred to Give Kids the World through wish organizations. If a family chooses to stay there, Give Kids the World takes over, paying for airfare, meals and accommodations, away from a world of cold stethoscopes and scary needles to a whimsical resort made just for wish families.

“For these kids that are here for that week, it’s an incredible experience,” said Brad, who has volunteered at the resort since 2009.

“It changes their lives.”

Give Kids the World handles an average week differently than a typical Orlando resort. In this world, time speeds up. There’s no more waiting for reasons to smile. Every Monday is Halloween and every Thursday is Christmas, with extensive decorations and activities to match. Children get to meet Santa, Mickey Mouse, Disney princesses, Spiderman and Mayor Clayton, a lovable bunny wearing wire-framed glasses who serves as the face of Give Kids the World.

Families live in on-site villas and can grab food at the Gingerbread House or a frozen treat at the Ice Cream Palace, both places where Brad, his wife Nichole, and two children, Kailyn and Josh, volunteer.

“We get a lot of joy in being here,” Nichole said.

“It’s amazing to have a place, coming from a family’s perspective, where you can just get away from all the medical drama and just be a family and have a vacation today.”

But Brad and his family first came to Give Kids the World from a different perspective: as a wish family.

In 2009, the Loewen family was one of the 7,500 families that visit Give Kids the World each year. Originally from Canada, the Loewen family learned about the non-profit through the Children’s Wish Foundation of Manitoba, where they lived.

None of this would have been possible without Noah, the youngest of their three children.

Born in September of 2005, Noah had a genetic disorder that limited his growth, causing him to develop but at a much smaller size.

The disorder was exceptionally rare; Noah was only the fourth recorded case in the world.

To this day it hasn’t been officially named yet. Doctors refer to it for now as gene 12q deletion.

“If I went to your computer, and I just took a file that you don’t know what it does out of Microsoft and deleted it off of your operating system, what is that going to do?” Brad said.

“For Noah, that was growth.”

Noah weighed only 3 pounds when he was born, concerning his doctors. They referred to Noah as having a “failure to thrive,” when a child’s weight gain is significantly low for their age.

The three other recorded cases of the disorder were all stillborn babies. Doctors told the Loewen family to prepare for the worst.

The first month of Noah’s life played out in the sterile halls of the NICU. Each day that little Noah lived, doctors counted it as a miracle.

But after weeks of bleak uncertainty, Brad and his family decided they had enough. They were taking him home.

“They were telling us ‘he would make it till tomorrow, he would make it till tomorrow, he would make it till tomorrow,’” Brad said. “After three weeks of that, it’s like ‘OK, we don’t know how long he’s going to last, so we’re just going to take him home.’”

But Noah would ultimately spend a total of more than 600 days in the hospital over the next three years, between attempts at normalcy at home. The hospital became the Loewen family’s world as Noah continued to grow at a slow rate.

At 1 year old, Noah weighed 7 pounds. By the age of 3, he was just less than 20 pounds.

His rate of growth caused him to have digestive problems, forcing him to be fed through tubes. Noah also couldn’t speak – he communicated with a handful of signs, along with facial expressions.

In early 2009, the Loewen family made a wish. They wanted to take 3-year-old Noah to Disney World.

By February, their wish had become a reality, arriving at the Give Kids the World resort.

The week that followed proved to be the most magical seven days imaginable for the Loewen family. They ate at the Ice Cream Palace every night, went to Disney World and, most importantly, turned their attention away from the heartache of Noah’s disorder.

Nichole clearly recalls Noah’s favorite part being the carousel at the resort. Under a giant mushroom top, Noah’s mother held him on her lap as they rode on the wheelchair-accessible turtle for hours on end.

Nichole remembers Noah learning to sign “more,” touching each of his small fingertips together.

“That was Noah’s favorite, riding the carousel,” Nichole said.

“We’d go around and he’d sign ‘more, more.’”

The weeklong vacation in Orlando brought their family closer, particularly Noah and his siblings, Brad said.

“Rather than Noah being special for being different in the sense that he’s sick, not well and kind of the downer, now he was special because we were able to be here,” Brad said. “It was because of Noah that our kids got to go to parties every night and go to Disney and have all this fun. It kind of, in their perspective, put Noah in a whole different place too.”

That following summer, Noah passed away from pneumonia. He had contracted the respiratory illness dozens of times in the past, but after three years of fighting, Noah left his family behind.

“We never looked at it as ‘poor us’ or ‘we’re entitled to have this’ or ‘why us?’” Brad said, his voice quivering. “It was ‘we’ve had him for three and a half years longer than we ever expected.’ That’s 170 weekends that we weren’t expecting to have … That’s huge.”

Back in Canada, the Loewen family decided to come back to Central Florida that following October to volunteer at Give Kids the World, staying for about a week before going back to Winnipeg again. They continued to do so three to four times a year until 2012.

In August of that year, they made the decision to sell their home and permanently move to Winter Garden, not too far from the Kissimmee resort.

Now they could volunteer every single week, serving families at the Gingerbread House and the Ice Cream Palace.

“It means the world to us,” Nichole said. “It makes us feel like we can make a difference. Noah’s legacy can live on through us and we can do something to honor him.”

Mark Hoewing, public relations manager for Give Kids the World, couldn’t help but admire Brad and his family.

“I think first of all it demonstrates the commitment that he has not only to his son and his son’s memory, but it has a lot to do with the commitment to his entire family, that they would make this kind of sacrifice to come down to Orlando to volunteer,” Hoewing said. “The week at Give Kids the World must have been very meaningful to the Loewen family.”

The late-night ice cream rush continues as the Loewen family serves up a little happiness one scoop at a time. Nichole drizzles hot fudge over a sundae as Josh and Kailyn peel bananas and mix milkshakes.

Brad greets every family with a friendly smile from the front counter, starting conversations and cracking jokes with the children. For just a moment, all that matters is what flavor of ice cream to pick.

“I’m not a psychiatrist or psychologist or anything; I’m just a parent who’s been there,” Brad said. “If that makes them feel more comfortable or helps their experience, that’s all I can ask for.”

On the other side of the counter, a little girl with shoulder length brown hair takes a peek from her reclined wheelchair. Her body lying still, only her eyes can say hello, quietly telling her mother which flavor she wants today. The cheerful man with the ice cream scoop makes small talk, holding out a cup of vanilla.

Just behind the counter, a little blond boy stares back from a photograph. He couldn’t be much more than 3 and a half years old, though his hands look far too tiny for his age. But it’s his face you notice first. His eyes are drawn blissfully tight, frozen in time, above a smile stretching a mile wide.

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