Make-A-Wish: Where Science and Hope Meet
"Knock, knock."
"Who's there?"
"Interrupting cow."
"Interrupting cow wh—"
"MOOOOOOO!"
Spend enough time with 4-year-old Kellan Tilton, and you’ll likely be met with a barrage of similar conversations, since that’s how the spunky boy de fines happiness. “It’s when people laugh really hard at my knock, knock jokes,” he says.
Kellan started chemotherapy on the third day of his life after being diagnosed with neuroblastoma. Paralyzed from the waist down, he began using a wheelchair at 17 months.
“You’re never prepared—how can you be?” asks Elizabeth Tilton, Kellan’s mom. “It’s a learning curve for us right now, and we just take it day by day.”
Make-A-Wish entered the family’s life last year on a mission to ful fill Kellan’s one greatest wish: to have a pathway built from his family’s Maine home to their barn, where he loves to help his dad, Dan, with the day’s tasks. Having a typical farmyard, it was hard for Kellan to navigate the hilly terrain in his wheelchair.
“It was frustrating for him because he’d want to get to the barn or the chicken house quickly like his seven other siblings,” Elizabeth says. “It was really important to him to be under his own power, rather than have us carry him or pull him in the wagon.”
Last August, Kellan became the director of the construction crew, describing to them where the 200-foot path would lead and where a swingset—a bonus provided by Make- A-Wish—was going to go. The strong-willed boy got to help, too: He rode the excavator, moved dirt and pushed pavers together. “It was every little boy’s dream,” Elizabeth says.
She fondly remembers the first morning after the path was complete. “Dan was down in the barn, and usually when the kids get up, I get them dressed and yell to Dan to come get Kellan,” she says. “That morning, he popped himself onto the ramp and onto his path and just went. I could hear him say, ‘Hi, daddy!’ and then he was there.”
Or, in Kellan’s words: “I love to zoom outside in my wheelchair!” And as the path was being built, that’s what you could often find him doing, giving high- fives to the crew along the way.
While the Tiltons have always been positive people (the word “can’t” isn’t used in their household), the Make-A-Wish experience has filled their hearts in a different way. “Our family got to see the community come together, and everyone involved has really become like family,” Elizabeth says. “I have kids who want to be wish granters now. This path is something he’s going to use for years and has already improved his life—and our lives—so greatly.”
Every six months, Kellan returns to the doctor for testing and scans to ensure the tumor remains dormant. “We’re waiting for that five-year miracle mark where he’s considered a survivor,” Elizabeth says. Now, it’s more about managing the paralysis, Elizabeth explains, since Kellan is a typical little boy. “If it’s a ball, he wants to catch it. If it’s a chicken, he wants to chase it.”
Managing expectations is also on their minds. Recently, Kellan returned home from a trip to visit his 21-year-old sister, Mollie, at a Connecticut school where she studies dance. He told his mom, “When I’m older, I’m going to hold Mollie up when she dances. When I’m older, I’ll use my legs.”
Mollie says statements like that demonstrate how positive Kellan is and how bright his future will be. “The Make-A-Wish experience was incredible because it’s the universe giving him what he deserves—a bright spot, with all of these people gathering to show him that it’s OK. He’s even more independent now and feels like he’s more a part of the team.”
Formerly a labor and delivery nurse, Elizabeth has experience with kids living with life-threatening illnesses. “A lot of them seem like they’re old souls to begin with, just because of what they go through,” she says. “Kellan is a special kiddo. He’s going to teach us a lot in his lifetime.”
To infinity and beyond
What would you wish for if you could go anywhere, be anyone, have anything or meet anybody? That’s the question that’s been posed to more than 350,000 children who have had a wish granted through Make-A-Wish America and Make-A-Wish International, which serves nearly 50 countries on five continents.
Inspired by Chris Greicius, a 7-year-old with leukemia who wanted nothing more than to be a police officer, the Make-A-Wish Foundation was born after a team of big-hearted Arizona Department of Public Safety officers banded together to ensure Chris’ wish came true. On April 29, 1980, Chris became Arizona’s first and—at the time—only honorary DPS officer.
The wishes are as original as each child’s imagination, and to qualify, kids must fall between 21/2 and 18 years old and be diagnosed with a life-threatening medical condition but not necessarily a terminal illness.
Italian dreams
Two years ago, 16-year-old Patricia Valderrama was living a typical teenager’s life in Texas. She loved to dance, play volleyball, run track and hang out with her close group of friends while dreaming of one day traveling to Europe. What she didn’t realize at the time was that she’d take an unexpected path to get there.
Diagnosed in 2013 with myxoid liposarcoma, a rare form of cancer that typically affects people in their 70s, Patricia made the very adult decision to have her left leg removed to get rid of the disease. Patricia’s mother, Arlyn, recalls the first moment she saw Patricia following the surgery.
“She grabbed my neck and hugged it and said, ‘I accept this,’ ” Arlyn says. Referred by her doctor to Make-A-Wish, Patricia knew nothing would make her happier than visiting Italy, a destination that entranced her after watching The Lizzie McGuire Movie as a young girl. “I just wanted to see her happy,” says Erick Valderrama, Patricia’s father. “I didn’t know she was wishing for Italy. I just follow where she wants to go.”
By coincidence, the trip kicked off last July on Patricia’s 16th birthday, and the teenager—along with her younger sister and parents—embarked on eight days filled with gelato, famed landmarks and Patricia’s favorite stop—the Colosseum. “When you think of Italy, you think of the Colosseum,” Patricia says. “Everyone talks about it, so that’s why I couldn’t wait to see it for myself. I get to say that I’ve been there now.”
The previously unimaginable experience bonded the family, Arlyn notes. “All of the joy and laughter and fun we had—it had such a positive impact on us as a family.”
These days, Patricia goes back to the doctor every six months for checkups until the cancer has been kicked for five years. That hasn’t slowed her down, though: She continues to run and dance and dream of new ways to explore the world.
More than wishful thinking
“A wish is highly emotional—and seemingly impossible,” says best-selling author and lecturer Tal Ben-Shahar, Ph.D., who is also the co-founder of the Wholebeing Institute, Happier.TV, Potentialife and the Maytiv Center for Research and Practice in Positive Psychology. “While the attainment of all goals motivates, there’s a different degree of significance assigned to each goal. Wishes are the goals that we consider most significant.”
So, what happens to the mind and body when our wishes—our most signi ficant goals—come true? More speci fically, what effect is the Make-A-Wish experience having on children?
Those are the questions a team of researchers for the Maytiv Center set out to answer in a 2015 study published in Quality of Life Research. Sixty-six children, ages 5 through 12, participated, all of them referred to Make-A-Wish Israel. Roughly half were assigned to a wait-list control group—children who weren’t certain when their wishes would be ful filled—while the other half were assigned to an intervention group that knew their wishes would occur within six months.
Researchers asked both groups of children to complete questionnaires rating measures of psychiatric and health-related symptoms, positive and negative effect, hope and optimism both pre-intervention and post-intervention. The result? The children whose wishes were granted had higher levels of hope regarding their futures, increased positive emotions and lower levels of depression and anxiety. Control group participants displayed lower levels of positive emotion over time with no major shifts in their levels of hope or health-related quality of life.
That might shed light on why Patricia now de fines happiness as “being content with what you have and truly appreciating the beauty that is life.” What stood out to her from her trip to Italy was the locals’ laid-back lifestyle. “They don’t wait until the weekend to have fun,” she says. “They take off work a couple of hours every day to visit with friends or go to a cafe and make that part of their daily lives. We don’t do that in America. We get so busy and put off having fun.”
Interestingly, the research also uncovered a decrease in the perception of physical limitations among the group of kids whose wishes were granted, something that Elizabeth witnessed first-hand.
“To be honest, building the pathway has made Kellan a little more reckless,” Elizabeth says, laughing. “He immediately understood that he was going to have more mobility. He told everyone, ‘I’m going to run really fast!’”
We know that many physical symptoms of illness can’t be changed. Where the ailment doesn’t have the final say, though, is in the frequency, intensity and course of those symptoms, because research shows us that those variables can be affected by psychosocial factors—like regaining a sense of independence for a little boy in a wheelchair who sees himself capable of “running.”
“The notion of brain and body being distinct is a misnomer,” says Steven Fox, Ph.D., a New York-based child psychologist whose patients have included wish kids. “So if you look at the mind and body, it’s all really one organ. So whatever filters through the mind in a positive way is going to have an impact on the body, and vice versa.”
At the conclusion of the study, Tal summed up the findings in a video. “The participants exercised a different muscle than the one they’re used to—the muscle of impossibility,” Tal explains. He notes that once a wish is ful filled, it becomes possible. “And once they've turned one impossibility into a possibility, why not do it elsewhere?”
The healing power of a wish
Rollin McCraty, Ph.D., executive president and director of research at HeartMath Institute, illustrates the importance of hope with an example from Doc Children’s book, The HeartMath Solution: Imagine you’ve been in a lifeboat at sea for days after being shipwrecked. Energy depleted, you’re lying in the bottom of the boat and suddenly see a bird. You peek over the side, spotting land. Suddenly, your energy is restored, and you’re paddling like crazy to get to shore.
“Hope is a real energy source,” Rollin says. “From a scienti fic perspective, hope is a really powerful, positive emotion— and emotions are the drivers of our physiology.” Rollin explains that no matter what we’re measuring in a person— brainwaves, heart rhythm, hormones—very little change can be detected if only a person’s thoughts are being measured. But once you trigger an emotion—say, the kind that would accompany a wish coming true—very large changes happen very quickly.
According to an article in the journal American Psychologist, anticipation may help replace negative automatic thoughts with positive ones that have been shown to be important when coping with life-threatening illnesses. For Patricia, that meant reading books about Italy, learning some Italian words and even planning her out fits six months before the trip.
Psychological healing, of course, isn’t the same thing as changing a prognosis. The role of a wish is to add fuel, since a positive outlook and improved health go hand-in-hand, as Dr. James B. Fahner, founder and chief guide of the cancer and hematology program at Helen DeVos Children’s Hospital in Grand Rapids, Michigan, and chair of the Make-A-Wish America Medical Advisory Council, explains.
“It’s one of the circles of life—you can’t have one without the other. But that constant cycle needs energy and inspiration to keep going, and a wish experience is a powerful source of that positive energy.”
The reality is that some kids are terminal—but that doesn’t mean the positive effects of a wish experience are lost. “When they look back on a period of time that was really dif ficult, it wasn’t just time spent in hospitals, and it’s not just images of illness,” Steven says. “They have memories of this special time, too, and that really helps give a sense of positivity to the family in particular.”
Exhibit A: Kathy Bailey, whose son Alex faced a brain tumor when he was 11 years old. His wish: to skydive over Disney World. Yet federal law says a child must be 18 years old for a tandem skydive. Unruf fled, the team of volunteers assigned to Alex’s wish worked their magic on the FAA until they received an exception.
“The wish experience is like a time machine—only you don’t travel back in time, but to a different time when you don’t have to deal with the blood tests and the chemo,” Kathy says. “It’s like you have a paintbrush, and it puts some color back in your lives.”
Alex passed away when he was 14, but that didn’t stop Kathy from upholding her end of the bargain she made with Alex before he died: She agreed to skydive on his 18th birthday. At 13,000 feet in the air, Kathy soared, cheeks flapping and spirit soaring—and the power of a wish lived on.
Amanda Gleason is a North Texas-based freelance writer and the former travel editor for Southwest Airlines' inflight magazine.
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