2008 Hero Kids

The courage, light and resilience of children facing serious illness is a marvel to behold. In many ways they are the greatest teachers of all, reminding us to live in the moment and showing us what things in life really matter.

Portraits of the incredible 2008 Hero Kids were unveiled September 6, 2008 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon.

Here are our 2008 Hero Kids:

Kiera Brinkley

Kiera’s favorite activities are dance, dance, and DANCE. She loves R&B music the best because, in her words, “I can create a dance off of it.” She is a vibrant, independent, and expressive teen who, when she’s not grooving to her music, likes to paint, draw, write poetry, and laugh. She’s also a big Lakers fan, and her favorite food on the planet is chili cheese fries.

She was diagnosed in 1995 with pneumococcal sepsis, which required a quadruple amputation. She says that the hardest thing about being an amputee and needing a wheelchair is that “many people look at me and automatically decide that my life is the hardest thing to live.” But she and her family believe that her amputations are not roadblocks; they are just an opportunity to do things differently. “Disability is a mindset,” she says, and would tell another child in the same situation that they can make anything possible. To her, a hero is a role model who is fun to be around--someone who realizes that his or her life isn’t perfect, but lives it for what it is.

Collin Callsen

If it’s rugged, Collin likes it. He blasts around on his dirt bike or a four-wheeler, and gets excited about trucks. His dogs, Jake and Jessie, are his best pals, and you can find the three of them on the couch watching basketball, or the dogs watching Collin play videogames.

Last summer he was diagnosed with Burkitt’s lymphoma. His treatment started out with surgery, chemotherapy, and radiation, and progressed to more surgeries--including a bone marrow transplant. He can’t do everything he likes anymore, especially when he’s feeling weak and sick, and what he misses most are his friends at school. But his spirit is as rugged as his pastimes. Even on his worst day, Collin told his mom that he was “doing good.” He is happy that he has an excuse to spend more time with his family, and when he is in the hospital he always has fun with the doctors and nurses. He thinks a hero is Superman, but anybody who knows Collin knows he has some special powers of his own. His mom says, “He is a special boy with a kind heart. He is brave and strong, and has taught us so much about living each day as it comes.”

Luis Chavarria

Little “Chito” is always on the go¾and always smiling. If you can catch him, you’ll probably wind up in one of his favorite games, kicking around a soccer ball or playing cars. He’s a Lakers fan, and loves running and dancing and any kind of music.

Understandably, the toughest part of having leukemia was the chemotherapy. Luis had to stay in his room for fourteen days straight. His mother says, “In spite of his pain and exhaustion from the medicine, he was always smiling and always had the strength to run and play.” His illness was a blow to the family because he was so young, and also because he was already living with Down’s syndrome. His glowing spirit makes him a hero to his family because he brought them closer than ever. Each morning during his treatment, the first thing his mom saw was his smile, which never showed “that he was going through pain or sadness.” He is a little angel, she says, and taught her that no matter how tough an illness might be, there is always a way to be strong and not give up.

Natasha Curtis

Natasha wants to be a veterinarian when she grows up, so it’s no wonder that her big brown eyes light up for her aunt’s dog, Emmi Anne. (The feeling is mutual.) She’s also a cheerleader for a “Team in Training” team and goes to the athletes’ practices and triathlons whenever she can.

She has lived with acute lymphoblastic leukemia since age three, which means she has gone through four years of chemotherapy and radiation. Her treatment also included a bone marrow transplant. Getting fevers and going to the hospital are the hardest part, though, because she “doesn’t feel so good” and has to miss school. Her family tells the story of when she lost her hair at age four--all she said was, “It’s okay, I am still beautiful.” And beautiful she is, inside and out. “Natasha is my hero for now and ever,” says her grandmother, “because she has never said ‘why me?’ She just says, ‘Let’s fight it!’” If you ask Natasha what makes a hero, she talks about the doctors and nurses who are trying to cure her cancer, and her Chemo Pal, friends, and family who try to make her time in the hospital better. Yet her own compassion and confidence are just as heroic!

Ricardo Diaz-Perez

Ricky is a musician at heart. It’s his favorite class at school, and whenever he has a spare minute, you can find him playing the guitar. He sings (and has a sweet voice, too), and appreciates a range of styles--everything from country to pop, to Andrea Bocelli. Someday, he’d like to learn Italian and French.

Before February 2008, trips out of the house meant going to karate, youth group, school, or friends’ houses. But the hardest thing about acute lymphoblastic lymphoma is how much the chemotherapy treatments changed his lifestyle. Besides the endless trips to the hospital, he was also neutropenic a lot of the time--which meant he couldn’t visit his friends without risking infection. He still faces challenging treatments such as the insertion of a tube in his chest to drain fluid from the tumor, and a bone marrow transplant.

Yet even illness has blessings. He says that he never would have known how much people love him, and he would tell others facing the same struggles to just keep trying, keep fighting, and never give up--and to trust God. “Ricardo is a spiritual young man,” says his mother. “He says prayers of healing for himself and for others.”

Gage Dole

Gage has a fine culinary palate. He may only be six but he knows what he likes: crab, lobster, salmon, venison, and barbecue ribs. Philly cheese steak will do the trick, too. It’s no surprise that his interests are as grown-up as his taste in foods--he loves to go rock climbing and camping. But he spends hot summer days like any kid his age, going swimming with his pals.

The hardest thing about being treated for Ewing’s Sarcoma and Acute Myeloid Leukemia is that he has to stay away from the pool. He was diagnosed in January, and his cancer has required chemotherapy, a bone marrow transplant, and the partial removal of two ribs. He also developed Fanconi’s syndrome, which impaired his ability to absorb nutrients.

“He has a strong determination to not miss out on life,” his mom says. After his surgery, he was out of bed quickly because he was mad at his pain for keeping him from playing with his best friends. To him, being a hero means doing something that is really hard and painful. His philosophy is simple: just be strong, and don’t give up. He is stoic, like his mom says, and he will push through any kind of discomfort to keep doing what he loves.

Douglas Eberwein

In his corner of the ring, Douglas has some serious muscle. His best pals are Superman, Spider Man, Aqua Man, and Batman. He can tell you all about who they saved today, and which bad guys they’ve stopped in their tracks. And like his superhuman buddies, Douglas has a sidekick or two--they’re stuffed doggies named Sally and Spot. He also has some weaknesses, particularly mac-n-cheese and pepperoni pizza.

In July 2006, he was diagnosed with acute lymphoblastic lymphoma and endured a course of strong chemotherapy, long hospital stays, and a bone marrow transplant from his twin brother, Hayden.

Even though Douglas may say that heroes “save guys that fall in the water” and protect us from “bad dudes,” it’s true that not all bad guys are in the pages of a comic book, and not all heroes wear a cape. His mother says he is a hero for teaching his family about strength and grace in the face of challenges. “He has been and is an amazing inspiration to us.”

Jimmy Fowkes

Jimmy is a lot like any teenage guy. He enjoys playing with his dog, Bronco, and catching a Blazers game at home with a pizza. He also loves watching any kind of Stanford sports competition because both his parents are alumni.

What makes his life different is that in 2006 he started radiation and chemotherapy for medulloblastoma, and this year is undergoing treatment for a recurrent episode. He has faced a brain biopsy, thirteen rounds of chemo all together, and has begun high-dose chemotherapy and a stem cell transplant to counteract the effects from the chemo. He says that the hardest things about being bald are (1) that your head gets cold, and (2) people stare.

To Jimmy, a hero is someone who altruistically goes out of their way to help people. His mother adds, “He has handled all aspects of diagnosis and treatment with grace, courage, and an unflagging determination not just to survive, but to thrive.” He lives life to the fullest, and believes that the best way to keep thriving in the face of cancer is to always stay positive--no matter what happens.

Hyrum "Chase" Gutierrez

Chase’s toys are so special to him, especially his stethoscope, his octopus, and his colorful snake. And if you sing to him, you’re the center of his world. He can’t use his voice to sing along or tell you he loves you, but his smile is worth a thousand words.

Since birth, his family feared for his life. Doctors said he wouldn’t make it through his first winter, and he was rushed many times to the ER, and intubated four times in the PICU. Only after fifteen months was he diagnosed with CHARGE syndrome, a rare genetic disorder that includes congenital anomalies, seizures, chronic respiratory failure, and other related symptoms. At fifteen months, he received a tracheal–laryngeal separation, a rare surgery that saved his life but left him unable to speak.

"He continues to be a fighter and the light of our lives,” says his mom. He is perceptive about people, and brings them together with his unconditional love-even though he is in pain most of the day. He is a hero for his joyful perseverance, and his constant, warm, loving attitude toward everyone.

Kyleigh Hutcheson

Even though she’s only two, Kyleigh has her own CD. While spending most of her life in the hospital, she picked up a love of music from CCA’s Music Rx team. When the “Kyleigh Reane Hutcheson CD” is playing, she bobs her head and moves her body to the beat. She also likes to strum the guitar and play with her best friend in the whole world, her Aunt Hailey.

Kyleigh was born with congenital mitral valve stenosis and has had three open-heart surgeries. The first was to repair her heart valve, the second to replace it with a St. Jude’s valve, and the third to repair a leak around the new valve--and she will need more surgeries as she grows. During one of her hospital stays, a high fever put her in a coma and threatened to shut down her liver and kidneys. But no matter what, she kept pulling through.

Kyleigh helps her family see what’s important in life, and to keep their faith in children’s strength. “She loves to play and always has a smile no matter how many things are done to her,” says her grandma. “She’ll pull through like the true hero she is. She knows how much she is loved, and more than anything she’s our baby.”

Lenka Ilasin

The two summers before starting college at Princeton, Lenka spent time at the hospital’s cancer clinic. She wasn’t there because she was sick. She’d learned that she had a talent for math and science, and her dream was--and still is--to become a pediatric oncologist.

After only three weeks at Princeton, a mass was detected in her body, and she immediately called the doctor. She’d been diagnosed with Large B-cell Non-Hodgkin Lymphoma, and wanted to know what to do next. She returned to Portland and was treated by her old “team” at the hospital. She faced chemo, and more chemo.

Lenka was never fazed by her diagnosis: she knew what needed to be done, kept her chin up, and took the two groups of chemotherapy treatment one day at a time. Her mom says she’s a hero for reaching out to the other kids in the clinic, and seeing their heroism, cheerfulness, and perseverance. Although cancer has meant disconnection with her friends and her university studies, her family and everyone she has met can see plainly: When she has put cancer behind her, Lenka will make one terrific doctor.

Caleb Jacoby

Even when Caleb is feeling under the weather, all eyes are on him. He is playful and engaging, and he has a bright spirit that loves sunshine and the outdoors--especially going on walks and watching birds. He has made friends with all the nurses in the PICU. At home, his best buds are his family and his three dogs, Bubbles, Bell, and Indaca.

Caleb’s condition is uncertain, but he was born with undersized lungs and a tethered spinal cord, which has required back surgery every six months. He spent the first six months of his life in the hospital, and received his tracheotomy at one month. He is hospitalized frequently for infections, and can’t run around or jump into his parents’ arms like he wants to do.

He always wants to make everyone smile, too--and that, he can do effortlessly. His parents say that no matter what he has been through, he loves all people and animals, and treats his doctors and nurses like family. He’s also learning to communicate with sign language, and to do everything a healthy kid can do, in his own way. “He is so smart for three years old. … He always has a smile on his face, and nothing can stop him.”

Dameon & Damina Jefferson

Damina likes playing tetherball and her favorite food is orange chicken. She also loves playing with her baby brother, Dameon. They have other siblings to play with, too, and their mother says that they are the biggest blessings in her life.

Both Damina and Dameon were diagnosed at birth with sickle cell anemia, and Damina has faced the most complications. Due to her condition, she experiences some of its most acute symptoms--especially periods of pain that keep her from playing certain sports, and as a result, she needs periodic surgeries.

Most people she knows don’t have sickle cell anemia, so some of them stare and wonder about her scars. Thanks to guidance from her doctor (whom she loves), she has learned how to take care of herself in the hard times. To Damina, a hero is a someone who can teach others about their illness. Her mom says that she has finally accepted it, and that she can keep on going even when she’s hurting--and still worry about her brothers and sister. “I find so much strength through Damina,” says her mother. “In her young life, she helped so many people in our family face their illness without being so afraid of treatments and hospitals.”

DiShannah Johnson

Shannah has a healthy sweet tooth: Her favorite baby foods are sweet potatoes and apples. She likes watching the Backyardigans cartoon, and she loves all kinds of music. She and her siblings live with their aunt and uncle, who say Shanna is the happiest baby they have ever met.

Shanna was diagnosed with many health problems, including defects in her atrial septal and atrioventricular canal. She has a gastric feeding tube and can’t eat as everybody else does, and has a large supporting cast of doctors-a cardiologist, endocrinologist, dietician, “g-tube” doctor, physical therapist, and a feeding team doctor, among others.

She was a 34-week preemie, and her biological mother Johnya suffered from serious diabetes and cardiomyophathy. Johnya did her very best to provide for and raise DiShannah and her big sister, but on October 2, 2007, Johnya died from problems related to her illness. Her family has gone through a hard time—an uncle passed away shortly after Johnya, due to the same condition. Shanna’s aunt says, “We have lost two very important people … but we have gained three beautiful children, DiShanna, Goldyona, and Xavia. We are truly blessed.” Shanna is a hero for her happiness in the face of difficulty, and for her courageous, contagious smile.

Darian King

All it takes to warm Darian up is a cup of Dutch Brothers hot chocolate. He loves playing with his nephews and his friends at preschool, and is a Nintendo ace.

In January he was diagnosed with osteosarcoma and has faced several rounds of chemotherapy. He then underwent a complicated amputation called a rotationplasty, and after that, there was more chemo. But despite all he has gone through, he has never complained, and continues to set an example of quiet strength for his family.

He and his family are coping with cancer by focusing relentlessly on what is good in each day. “Darian is showing many others his strength and courage and hope,” says his mom. “He has been through so much, yet keeps going.” He is a model of what it means to live life one day at a time, and live from blessing to blessing. His mom says about what he has taught her on this journey, “Don’t ever try to figure out the future. It takes too much work!”

Adriana Murillo-Galindo

“Nana” has a dreamer’s spirit. She lives to paint and read fantasy books. But despite the magic of those fantasy worlds, her favorite place to be is with her folks--she has a strong sense of family, which gives her strength and makes her the smiley, happy girl that she is. She loves to capture her memories with them and with her friends in scrapbooks.

Last spring she was diagnosed with acute myelogenous leukemia. She underwent chemotherapy and had a rough experience with her bone marrow transplant surgery. She gets nausea, puffiness, and stretch marks from her steroids, and also has allergic reactions to her medicine--meaning headaches, stomach pains, and mouth sores. She wishes she could see more of her family and friends.

Yet she always has that smile. She is always strong, and always telling others not to worry about her. No matter what happens she just “rolls with the punches, goes with the flow,” says her mother. A hero is anyone who has been through a lot, and according to her mom, her family has become even stronger by watching Adriana be strong.

Kamelah Noel

If there were an Olympic medal for “most sports,” Kamela would be standing on the tall pedestal. She plays basketball, softball, and volleyball; takes ballet; skis; wake-boards; and loves tubing and boating. When she’s not on the move, she likes to spend time making art and at church activities.

Her diagnosis this year of transitional pre-B-cell acute lymphoblastic leukemia hasn’t stopped her from trying to do the things she loves. But it has been hard: she experienced a lot of pain for nine weeks prior to her diagnosis, and was consequently very weak when her chemo treatments began. She underwent bone marrow aspirations, twenty lumbar punctures, high-dose steroids that caused acute stomach pain, a kidney stone, and an allergic reaction to her medicine that requires shots every other day.

Kamela was scared to lose her hair, but from the very beginning, she was more concerned about the people around her. “It makes me sad that everyone is so worried about me,” she said. She faces each day and each treatment with a positive attitude and an open mind. Her parents say, “She is a very strong girl physically, emotionally, and mentally,” and that she wants to believe there’s a reason for her cancer--that it will shape her future for the better.

Madeline Robbins

Madeline’s imagination is her playground. It’s her favorite toy, and a partner for when she straps on her dancing shoes. She loves to dress up in beautiful gowns, too--but don’t get the wrong idea. If her mom wants to lure this magical creature to the dinner table, she doesn’t use fairy cakes or tea and crumpets. Madeline just loves corn on the cob.

Last September she was diagnosed with plueropulmonary blastoma, and needed surgery to remove the tumor and the lower left lobe of her lung. After surgery she faced chemo, many IVs, and a stem cell transplant. The hardest part for her was “having the sleepy medicine” for MRIs, CT scans, and X-rays.

To Madeline, a hero is a person who does good things. And lucky for her parents and doctors, she helps them out so much by having an amazing vocabulary. She’s in tune with her body, too, and can describe exactly how she’s feeling. “It helps her and us get through the frustrating moments,” her parents say. To other kids going through the same struggles, she has simple advice, though--lots of rest, lots of food, and lots of playing.

Waldo Rodriguez

Waldo likes to listen to movies. He likes street noises and car trips, and being surrounded by people. He loves music, because when he’s listening to his favorite band his blindness doesn’t matter.

He suffers from epilepsy, severe cerebral palsy, and hydrocephaly (fluid on the brain). He has been hospitalized many times in his young life, but the worst was the seven-month stay that resulted from a shunt revision and an infection in his brain. He needed seven brain surgeries, and suffered a huge seizure that left him in critical condition for two weeks. But as his mother says, as with all his crises, “He came out as a miracle and a hero.”

His mom says that a hero is usually someone strong, with goals and dreams, and who fights to achieve them. Yet in surviving a situation none of us would freely choose, she says, “Waldo, who has no will of his own, has been stronger than what anyone would expect, and more.” Her advice to parents of children like Waldo is to make the best of what you have, and confront the situation with a good attitude--because “every good moment with your child in this life, every smile, and every peaceful moment with him or her, is a gift from heaven.”

Brooke Rohrer

Catch her if you can: Brooke is a girl on the move. She likes being on her bike or her scooter, and also dancing and swinging. On any of her adventures, you can bet that Blossom is tagging along--the stuffed bunny that her brother made for her when she was born, and which has become her constant companion. She may have a soft spot for Blossom, but make no mistake, she’s got attitude.

Her will was put to the test last year when she developed Langerhan cell histiocytosis. That meant twelve weeks of weekly chemo, followed by tri-weekly chemo for another year, prednisone, and countless bone scans, MRIs, and X-rays.

It’s hard for her parents to see her suffer the negative side effects of her steroids and chemo regimen, and the frustration it sometimes causes her. But she is a hero because she shows others that she’s capable of more than they know. “These children really help us adults gain perspective,” say her parents. “She is strong beyond belief, and brave when she didn’t have to be.” And her sassy, strong disposition keeps her resilient and ready to outrun anything that comes her way.

Jarred Schaper

Jarred may not be able to walk, but on the Internet, he doesn’t need help keeping up with anyone. He likes surfing the Disney and Nickelodeon websites, and when he’s not online, watching high-tech, digitally animated movies like Cars and Toy Story. He thinks school is fun, and also likes watching the Blazers play.

For most of his life, Jarred has lived with spinal muscular atrophy (SMA), a condition that causes motor neurons in the spine and brainstem to die off. As a result, he’s battled pneumonia and developed scoliosis. It takes more effort to do the things other kids do, even basic actions like eating, and he depends on other people to help him move around.

Jarred’s response has been simple--just become adaptable. He is always happy and looks for ways to have fun, and likes being around people. He’s a natural at making friends. And naturally, his idea of a hero is someone who is a people-person, someone who is honest and compassionate. For a kiddo who can connect with people so easily, it’s a slam-dunk to say that he has the heart of a hero.

Cassidy Quinn Scruggs

You won’t catch Cassidy resting on her laurels, not between soccer games or softball practice, not at basketball or dance class, and not during Tae kwon do or Scout meetings. You won’t see her getting bored at home or at school, or when she’s working on an art project. She might be busy, but it’s because she has so much energy. Everything is an outlet for her bold sense of humor, and if she ever has a spare minute, it’s a chance to show off one of her magic tricks.

In August 2006, she was diagnosed with Wilms Tumor. The chemo treatments made her incredibly sick and weak, and she needed a feeding tube. The emotional difficulty was even harder. She says, “Sometimes I feel like I don’t fit in and it hurts when people make fun of me because I’m different.”

To her, a hero is someone who is kind to others through good days and bad days. Cassidy’s mom says that it was her giant heart, beautiful eyes, and mischievous smile that held the family through the worst part of the treatment, and that her strong will powered her recovery. Even though the chemo is rough, she’d encourage other kids going through the same thing to stay strong—because “you are too tough for it.”

Aleksandr Vorobets

“Sacha” lives with his parents and three siblings, and his beloved cat. Besides his soft spot for animals, he also has one for his family’s home-cooked borscht--which is basically Russian vegetable soup with yummy beets, potatoes, and cabbage. There’s nothing like Mom’s cooking.

In 2003 he was diagnosed with muscular dystrophy, and he cannot walk or breathe normally. He also came down with pneumonia as a further complication, and was put on steroids, and needs his trach to breathe better.

What makes Aleksandr a hero is his constant, positive focus on the future. He stays playful, and talkative, and inquisitive. And as his mom says, his family works hard to keep his home environment normal, like any other kid’s--and in return his positive attitude keeps their hope for his future bright.

Sawyer Wolf

Little “Bean” is more like a little streak of lightning in his electric Lighting McQueen racecar. He loves to play at the park and, if you can get him out of that car, he also loves to play soccer, baseball, and basketball. But more than anything else, he loves his “super sib.” He does everything to keep up with and be just like his big brother, Owen.

In May 2007, Sawyer was diagnosed with the rare Rosai–Dorfman Histiocytosis, a condition that causes cells from his immune system to accumulate in his lymph nodes. He needs shots two times a day, and has undergone bone marrow biopsies, port surgeries, weekly chemo for ten months, blood transfusions, breathing treatments for his lungs, infections, and long hospital stays. Because the condition is so rare, there are few disease-specific communities for families like his, and even less research.

Yet the task of adjusting to “a new normal” has also brought his family closer than ever. His mom says, “We find him truly our inspiration and source of strength in difficult times. He is a gift.” He’s their hero because he is so courageous despite all the uncertainties, and because he recognizes that his doctors and the people at CCA are inspirations, too--heroes who, like him, do extraordinary things without even realizing it.