Sarah and Willie Lewis pose for a shot Friday in their house on Barclay Street. The Children's Charitable Foundation, an Anderson, S.C., organization chose the Lewis family to receive an all-expenses paid trip to Walt Disney World Resort in Orlando, Fla., in May. Willie has a rare disease that has caused emotional and financial hardships for the family.

Photo by Hans Hallgren

Sarah and Willie Lewis pose for a shot Friday in their house on Barclay Street. The Children's Charitable Foundation, an Anderson, S.C., organization chose the Lewis family to receive an all-expenses paid trip to Walt Disney World Resort in Orlando, Fla., in May. Willie has a rare disease that has caused emotional and financial hardships for the family.

Waiting for the World

Charitable foundation sending local family on needed vacation to Walt Disney World

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— Six-year-old David R. "Willie" Lewis flipped through a booklet Friday afternoon, his doe eyes filled with wonder and anticipation as his fingers ran across glossy pictures of spectacles and characters he'll soon see.

But not soon enough :

"I wish it was happening today," his sister, Dajia, 7, said looking over his shoulder.

"Yeah," Willie said, flipping to another page. "I want to see the growling thing, swim, ride the big trains, go down the waterslide, the gravity place, ride cars, roller coasters that go fast, (see) the giant cell phones, play with teddy bears."

And the list goes on.

And on.

And on, each page of the book outlining all there is to see and do at Walt Disney World Resort in Orlando, Fla., prompting another addition to the never-ending list.

The good news for Willie is that he'll have a week to cross them all off.

The Lewis family of Craig - parents Sarah and Nathan, Willie, Dajia, Nate, 8 and Sherie, 12 - recently learned that a national charitable organization has chosen them to receive an all-expenses paid trip to the house of Mickey Mouse.

Craig resident Cathy Copeland relayed the story of Willie - who has a rare condition known as X-linked inhibitor apoptosis deficiency, or XIAP deficiency, and the financial and emotional struggles his family has had dealing with the illness - to the Children's Charitable Foundation, a small outfit in Anderson, S.C.

Willie is one of an estimated nine or 10 people in the world to have the illness, which often makes him sick, requires constant doctor visits to Steamboat Springs and Denver and keeps him indoors for long stretches of time.

Cathy's husband, Clay, works with Nathan at Twentymile Coal Co., and she and Sarah are friends. Friday was the first Cathy had heard about the family receiving the free vacation.

"I've watched this illness that Willie has, and it's been really, really hard on the family," Cathy said. "I was hoping something would pull through, but you never know if it's going to happen. I'm extremely elated something has come through for them."

Herself a mother of three, Cathy said she empathizes with the difficulties Willie's illness presents to Sarah and Nathan.

"I could not imagine being in their position, not knowing what Monday to the next is going to bring. : It just breaks my heart."

The tough times for the Lewises continued at the end of 2007.

Nathan was injured at work and needed reconstructive knee surgery, Sarah said, keeping him from work until a few weeks ago. To supplement the family's income, Sarah was working four jobs - cleaning, babysitting, and working as a waitress at Mathers Lounge & Cafe and the now closed Applejack's restaurant.

Cathy said she believes God doesn't throw more at a person than he or she can handle. If that's the case, she said, "He must know (Sarah is) a strong woman to load her up with so much."

The Lewis' trip - valued at about $6,000, includes airfare, lodging and Disney World tickets, among other paid expenses - is scheduled for May 10 to 17.

The family is worthy to receive the donation, said Mark Morand Jr., president of the Children's Charitable Foundation.

"The child has what I could call a degenerative medical condition," he said. "The family has spent a good deal of time and care on the child and hasn't been able to get away as a family."

Providing the family with the means to get away from the stress and problems back home for a week makes the small charity's mission to help families across the country worthwhile, Morand said.

"I think that's the most rewarding part of any charity - to make a difference on a family's life," he said.

The Charitable Foundation donation isn't the first the family has received since May 2007, when local fundraising efforts for Willie began. Since then, the community has rallied around the youth, donating about $15,000 to the family to help relieve mounting medical expenses.

Word eventually spread to The Cartoon Network - which Willie keeps dialed into constantly - and from its Los Angeles office, network executives sent Willie a box of toys, notebooks, DVDs and other fun stuff last year.

Sarah said she's thankful for the help.

"It's awesome there are people out there like that," she said. "Everybody knows his name. A lot of people have given donations. It's still kind of unbelievable. It's made a difference."

Sarah said Willie and Dajia's anxiousness for the trip has been contagious - all the children are brimming with excitement to leave for Disney World.

"They want to start doing a countdown on the calendar," she said.

Joshua Roberts can be reached at 875-1791, or jroberts@craigdailypress.com.

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