Posted: Sunday, December 7, 2008 12:00 am
Nine-year-old with cystic fibrosis will go to Disneyland with family
By Jennifer Moody
Albany Democrat-Herald
Most of the time, things go well for the Hart family.
Nine-year-old Kennedy loves to write and illustrate her own stories. She rides horseback and plays with friends from Periwinkle Elementary School. Her freckle-dusted smile lights up the room.
No one would know, just by looking, that she was born with cystic fibrosis.
But her parents, Kristen and Andy Hart of Albany, know. They monitor Kennedy constantly, keeping track of the medications that thin the mucus in her lungs, the enzymes that help her pancreas function normally. The hereditary disease colors every part of their lives.
The mission of the Make-A-Wish Foundation is to lift the stress and worry from families like Kennedy's, even temporarily. Next week, the foundation is granting Kennedy's wish by sending her, her parents and her brother Zach, 17, to Disneyland.
"It'll be a really fun adventure," the fourth-grader said.
Wish-granters Harry and Carol Carter of Lebanon, who volunteer with the mid-valley portion of the Oregon branch of the foundation, threw the gift presentation party Saturday at Pizza Hut in Albany.
Zach and family friend Rhonda Pomeroy of Lebanon, whose son Chris also was a Make-A-Wish recipient, both work at Pizza Hut. Employees donated nearly $60 for Kennedy's party to give her extra spending money at the theme park.
The Harts will fly to California on Tuesday and return Sunday. Make-A-Wish representatives oversee every part of the trip and take care of all expenses, from travel to tips, Carol Carter said.
"They're never asked to do anything back, because they've already given a bunch by what they're going through," she said.
Make-A-Wish works with families who have children with life-threatening - though not necessarily fatal - medical conditions.
The Harts learned almost 11 years ago exactly how threatening cystic fibrosis can be when they lost their baby son, Travis, to the genetic disorder they didn't know they carried.
When Kristen became pregnant with Kennedy 14 months later, the family had the fetus tested for the disease.
When the tests came back positive, they did everything they could to be ready. At two days old, Kennedy had surgery to remove a blockage in her intestines caused by the thick mucus, a blockage like the one that killed her brother.
These days, "I would say it's kind of a challenge," Kennedy explained. "You have to take pills. It's just an extra thing you have to do."
Next year, Kennedy will undergo sinus surgery to further reduce the chances of the respiratory infections to which cystic fibrosis children are prone.
The family's dream is that a cure will be found before her 10th birthday - but they'll take one any day it comes along. They don't allow themselves to think about the 40-year lifespan of most cystic fibrosis patients.
"I, most of the time, do not even go there. If I did, I would have to be completely sedated," Kristen said wryly.
That said, she added, she wasn't about to pass up a chance to make her daughter smile. So she nominated her to receive a wish.
Kennedy's first wish was to be on television, preferably as a guest star on her favorite show, Nickelodeon's "iCarly." When Screen Actors Guild rules made that unworkable, she chose a Disneyland trip instead.
"Lots of people say it's fun. It'll be my first time on a plane," Kennedy said.