Helping make Culver children’s wishes come true
Many Citizen readers will recall the very successful efforts of Culver Community High School's Student Council in raising funds to help a young Marshall County boy's "Make-A-Wish" dream come true. The endeavor last spring surpassed practically everyone's expectations to the tune of $3,500, prompting a Make-A-Wish volunteer to visit the school's annual Sports Spectacular event to accept a check from the students (the Make-A-Wish boy in question, Carter Rudd, is currently in remission from his cancer and hopes to make his Disney World trip later this month).
Now CCHS students have rallied behind two Culver area youth to help make their wishes come true in the next few months, spurred on by CCHS English teacher (and Student Council sponsor) Tina Stacy, who was so inspired by the students' efforts that she recently became a volunteer itself, visiting with two Culver families whose young children are on the waiting list to make their wish come true.
Eight-year-old Chloe Hough, the daughter of Larry and Loretta Back, was diagnosed at six months old with cerebral palsy, for which she's had constant therapies ever since. At age three, Chloe had hip surgery and a "G" tube placed into her stomach at age four. Wheelchair-bound and able to say a small handful of words, Chloe attends third grade at Knox Elementary School, and, says Loretta, is "happy and outgoing, and loves music — especially country music — to death."
She's currently taking medication that doctors hope will prevent the need for surgery in two months to have her tendons lengthened, say her parents.
Chloe's cerebral palsy — a muscular disorder — is not the worst doctors have seen, says Larry, who notes she's in Stage 5 or 6 of the 8 stages of the illness. Her condition will likely deteriorate as she gets older, and she's already outlived doctors' predictions she wouldn't live long past her hip surgery. She also suffers from chronic pneumonia, though her parents are thankful it's been two years since her last episode.
Chloe shares her home with siblings Lillianna (20 months), Arianna (three years old), and Landon (age five), who love to "kiss and love on her until she gets a little irritated," smiles Loretta.
As might be expected, Chloe's condition complicates life for the Back family, who must tear down and set up her wheelchairs and make other accommodations in addition to the usual challenges of running an errand or be in any way mobile with young children in tow.
Things are complicated as well by the fact that 24-year-old Larry Back suffers from augmented meningitis cytosis, which has required multiple knee surgeries and leaves him with tumors on his knee, requiring him to use a cane to walk any significant distance. Doctors also want to perform surgery on his left shoulder and back. He's opted to forego the annual knee surgeries — which seem to leave him in ongoing pain more than anything else, he says — originally planned for his knees. Because of his condition, only Loretta is able to work outside the home.
Larry stays home with Chloe and the others, and is assisted by friend Alan White, who shares the family's home and assists with the children. Besides the Backs, only Chloe's grandparents, aunt, and White are able to care for her, and Chloe's parents are grateful for the help these family members and friends provide.
"We look at the kids and know that God put us here for a reason," says Loretta, discussing the family's source of ongoing strength. "He's the only one. We said if we couldn't do it, He wouldn't have (placed us in this situation); we pray with our church."
Chloe's parents ran through a list of various possibilities for her "wish" until she responded with excitement to the notion of going to Disney World, to which the family is scheduled to travel in March.
"It's exciting for the whole family," says Larry, though he admits they're a bit nervous as none of them — Chloe included — have traveled by airplane before. "We've never been out of state besides Kentucky before. It's something we can do as a family that's real fun — something to enjoy and remember the rest of our lives."
Loretta, noting Chloe's doctors felt the trip would be "fun and interesting for her," agrees, adding, "This is family time."
Up the road a few short miles in Burr Oak lives young Chris Webb, Jr., age four, with siblings Devin (age 9), Leeah (age 6), and Bentley (three months). Mom Sheena Passino says Chris was born with complex heart disease, and has had four open heart surgeries between his birth and age two.
"Right now he's doing good," she explains. "He takes medication and sees the cardiologist every six months for a checkup. His right and left ventricle leak, so he's on medicine to help slow that down; they can't stop it, but they can slow it down."
As Passino notes, "you can't tell there's anything wrong with him by looking at him." Chris is an outgoing, talkative, and precocious boy full of smiles and enthusiasm.
However, doctors "keep informing me that could change at any time. There will be more surgeries later in life when he grows more, like in his teenage years he could run into complications. They try to do the last surgery at two years old so they can make (his heart stint) big enough to grow with him."
Chris must avoid bumping his head (he's on aspirin and bleeds easily, and must beware of brain hemorrhages), though such avoidance is a challenge for an active four-year-old boy. When he falls, he bruises easily as well, and though Chris may say he feels fine while exerting himself, shortness of breath and blue lips are signs it's time for him to sit down and rest. He must also avoid colds and other immune system-compromising illnesses.
Chris is too little, says Passino, to really grasp the significance of his condition (he proudly displays what he calls his "zipper," a surgery scar running down his chest), though he realizes he has a bad heart and cautions other children in his Head Start classes not to hit him in the chest.
Passino is pleased that Chris hasn't suffered some of the thinness and slower learning abilities many babies with heart conditions undergo, and thankfully the frequent need to "re-learn" basic skills after each surgery didn't apply to Chris.
Passino applied online this past spring for Make-A-Wish, and Chris was quick to choose Disney World, a trip planned for February, 2011, to coincide with his birthday on the 13th of that month.
"He's ready to go," smiles Passino, a statement evidenced by Chris' obvious affection for a Mickey Mouse plush toy Tina Stacy sent him. "He wants to meet Mickey first and ride the teacups. That's what he wants to do. He didn't mention anything else (even though) he's seen the websites and all the different rides and other characters."
"It's something special for him," says Chris' grandmother, Mary Corchado. "When money's tight, you can't do a whole lot.
"Normally birthdays around here are just cake and ice cream and a couple of friends," affirms Passino.
"This will be really special for him," adds Corchado. "It's something he'll always remember."
That's the hope Tina Stacy and the CCHS Student Council have for both children. Stacy's role as a volunteer is to be a bridge between the family and the Make-A-Wish Foundation's Indianapolis office, and she'll also coordinate information about fundraisers and other endeavors.
The Student Council is working with local businesses to raise funds, and a grade-wide competition at the school is planned to see who can sell the most candy canes for Chris and Chloe in the school and the community ("Candy for Chris and Chloe," in fact, is the heading under which their efforts will appear). The winning grade will watch a Christmas movie with popcorn in the school auditorium.
Stacy admits they're trepidatious about raising money as the holidays approach in an already recession-afflicted economy.
"We need all the help we can get," says Student Council President Mark Maes, who has hope in the generosity of Culverites. "The fact is, Culver has raised money for a lot less important causes than this in the past."
He adds he's been proud to see how Council members — including, he points out, a number of freshmen — are "stepping up and trying to find the best way to raise money in a short time."
With February and March trips planned for both children, time is obviously of the essence, and Stacy hopes donors will see assisting the families as one of the great Christmas gifts they can give.
"It's easy to dismiss this as, 'Oh it's only a free trip,' but the fact is these are people in our community who have suffered for a long time," Stacy explains. "These families' lives have been forced into a medical condition;. The things regular families take for granted, like getting up and going to the store, can't easily be done by them, and they've been doing it for a long time. That's a rough situation to be in. Granting a wish for them is granting the whole family's wish that for once, everything is taken care of for them, so they can be taken care of and just enjoy being a family."
A total of $12,000 is needed for both children's trips, and those funds are to be raised in the children’s' local communities. Student Council itself has pledged $500, and so far Culver Elementary School's Soup for the Soul charity event has pledged an additional $500. Stacy is also hoping more potential donors — and ideas — will come their way. "We are begging for contacts," she admits.
The Council's candy cane fundraiser will officially kick off November 29 and run through December 10, though of course donations are welcome anytime up through January, 2011. Those wishing to donate are encouraged to do so by contacting Stacy through the high school, at 574-842-3391.