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2006 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 2006 Hero Kids were unveiled September 30, 2006 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon.
Here are our 2006 Hero Kids:
Juan Jose Arauza
Thirteen years old and lovingly called “Juan O Juanito” by his family, Juan is an inspiration to anyone who knows him. His marvelous compassion, acceptance and unfailing appreciation for life represent what is best about humanity. His gregarious nature and endearing personality are gifts – and largely why he has so many friends and admirers.
The fact that Juan suffers from Cerebral Palsy, with no ability to walk or talk, is no obstacle. Juan’s constant resolve and will to move forward against all odds set a heroic example. He finds joy in music, math and chowing down chicken nuggets. He can play Nintendo with the best of them, and likes to watch cartoons and spend time on the computer.
“Juan is remarkable,” says his mother, Consuelo. “He has taught us to truly value life every day – and to have lasting hope. We’re a much more united family thanks to him. Despite his many challenges, Juan always tries to help others. As his mother, I feel a sense of pride and respect for Juan that words simply cannot express.”
Autumn Boynton
This delightful, fun-loving four-year-old has an affinity for the arts. She paints, sings, dances and loves music – everything with heart. When she’s on the go, she likes riding her bike and going to the park, and according to her dad, Billy, she pitches in around the house to chase down dust bunnies. Come dinnertime, she likes to have carrots, rice and grapes – with an occasional Hot Pockets thrown in.
A diagnosis of Wilms Tumor, a cancerous tumor of the kidney, has meant round after round of chemotherapy, a surgery to remove her kidneys and dialysis four days a week. And that’s on top of the upcoming surgeries she faces, and the fact that she can’t go to school or be around other people too much.
Throughout this arduous battle, Autumn’s strength and determination have not waned. “Autumn is a very tough little girl,” says Billy. “She’s always ready to overcome whatever’s next. She is wise far beyond her years.” Autumn’s joyful presence, brilliant smile and warm heart brighten the days of everyone she meets. No wonder those who are fortunate enough to know her call her “Awesome Autumn.”
David Campos
David, a.k.a. “D” in his family, is an energetic and dogmatic 7-year-old who gives everything his best shot. In fact, you could say he puts the D in “does.” He loves to write, draw and read books. He’s an avid soccer player and young outdoorsman with an endless appetite for eggs, potatoes and chicken mole. And he always makes sure his dog, Mona, gets some loving, too.
Since 2001, David has battled Acute Lymphoblastic Leukemia (ALL). Tubes, needles, IVs, multitudinous daily pills and regular trips to the hospital are just one part of his challenging routine.
David’s faith, smile and courage have guided him through this struggle with incredible grace, says his mother, Iraida. “David has something special. His smile makes everyone want to laugh, it’s infectious. At the hospital, nurses and doctors comment on how joyful he is, no matter what he has to endure.”
Shayna Dowd
Shayna, 17, is an especially warm, cheerful and loving teen whose favorite thing to do is socialize. She loves it when people read to her and is a huge fan of books on tape – and has racked up a lengthy list of favorites. Despite a big sweet tooth, she’ll probably pass by the chocolate and choose surf-n-turf (steak and shrimp) for a meal anytime.
Cerebral Palsy, a disabling condition affecting the motor areas of the brain, impaired her movement and ability to communicate, but it certainly hasn’t limited her strength of spirit. What amazes Shayna’s family most is her capacity to accept her situation and face daily challenges with an unshakable sense of humor.
“Shayna loves to laugh and make others laugh. She’s an incredible person,” says her mother, Suzanne. This hero’s passion for life has taught her family that laughter is one of the greatest gifts.
Lillian Ellis
If a contest were held for the cutest two-year-old on the planet, Lilly would win hands down. She’s a precocious toddler with little rosy cheeks that are just beggin’ to be squeezed. She has an ear for all kinds of music and giggles a lot when she plays with her puppy, Max. If it were left up to her, she’d make a meal out of ketchup for breakfast, lunch AND dinner. She loves to wear bows in her curly blond hair – and has confidence that belies her age.
Last year, Lilly was diagnosed with Nephrotic Syndrome and FSGS, conditions affecting the kidneys and causing swelling around the eyes, in the belly and legs. A host of painful surgeries, lengthy hospital stays, hemodyalysis and ongoing weekly treatments haven’t slowed her down.
Her radiant smile brings warmth to every room she enters, and her mother says that Lilly’s easygoing manner and fantastic attitude make her a complete joy to be around.
Emily Kay Flowers
Ems’s sweet nature, huge heart and wonderful spirit bring out the best in everyone. Born with Down’s Syndrome and an AV canal heart defect, she suffered congestive heart failure at just 3 months, which was followed by her first open heart surgery at 6 months, and a succession of major surgeries and intense treatments that will most likely continue throughout her life.
Now 11, her can-do attitude amazes people. So does her love for the finer and most fun-filled things in life – cooking and making crafts with Mom and Grandma, watching her brother play baseball, and listening to her favorite music from Oklahoma! and Phantom of the Opera. Reading, science and spending time with friends rank at the top of her list, as well.
“Emily faces each difficulty with such courage,” says her mom, Lorrie. “When enduring painful procedures she rises to the challenge. And when we tell her how sorry we are for what she has to go through, she always responds, ‘I’ll get better, it’s OK.’”
Her health challenges have taught her family lasting lessons about love, kindness and encouragement. Emily’s generous spirit and quiet courage are qualities of a hero.
Lesly Foster
Give Lesly, 5, an easel, some paints, and a generous plate of Ritz Crackers (for extra energy, of course) and she will keep herself busy for hours. When she’s not working on a masterpiece, she’s driving her red Jeep around the house, chatting on the phone, taking pictures or heading out on a walk with her two Yorkshire terriers, Charlie and Rocky. She’s an animated little girl who will always take the time to stop and smell the flowers. She can hardly wait for the holiday season to come each year, because that’s when she can hear her favorite song, “Rudolf the Red-Nosed Reindeer” all the time.
Lesly suffers from Neuroblastoma, cancer of the sympathetic nervous system, which has led to six rounds of chemotherapy, radiation, surgery and countless pokes and prods, along with multiple stays in the Pediatric Intensive Care Unit (PICU).
Despite her struggle over the past year, Lesly has never stopped smiling. Her laughter and unrelenting optimism inspire her family and everyone around her. Kathy, her mother, says, “Lesly’s beautiful attitude got us through this tough time – and taught us to have fun with everyone and everything.”
Cavan Franklin
Ten months after Cavan was born, his parents learned that he had Meningococcal Meningitis, a potentially fatal disease that affects the lining of the brain and spinal cord. Since then, painful skin grafts, surgeries, bleeding, scarring and the ravages of infection have all but monopolized his life.
Yet what people remember about Cavan is his grit, huge heart and joy. He loves music, from country to rap, and playing with his siblings and dog, Chevy.
“Cavan has maintained such a happy demeanor through all of his pain and suffering. He loves everyone – and offers hugs and kisses all the time. No matter what, he stays strong. We love him so much,” says his mom, Brandi. Heroes are those who conquer all odds and survive, and his family feels blessed to have this brave young hero in their midst.
Cody J. Griffiths
Two-year-old Cody, or Cody Bear, may only be a toddler, but he has a giant zest for life. He can dig in to a bowl of spaghetti and meatballs with more gusto than kids twice his size. He likes hearing classical music and the tunes of Carrie Underwood, whose voice prompts some new dance moves and hand waves every time he hears it. He gets a kick out of playing with his 3-year-old brother, Johnny, and his Chinese pug, Charlie.
Recently diagnosed with Acute Lymphoblastic Leukemia (ALL), Cody has already undergone abdominal surgery, been in and out of the Pediatric Intensive Care Unit (PICU) several times, and spent two months in the hospital.
According to his mother, Lindsay, not even the hardest times or darkest moments can lessen Cody’s will to persevere. “Cody has been so brave, so strong. When we felt like we didn’t have the strength to go on he kept fighting for himself – and for us. He teaches us to have faith and remember that every day is precious. That’s what makes him such a hero in our eyes.”
Joseph Hazen
Before Joey was 3 months old, he underwent multiple surgeries, suffered cardiac arrest and endured pokes and prods numbering in the triple digits. As a result of Pompe Disease, a rare and severely debilitating illness that reduces muscle and respiratory function, he’ll require six and half hours of enzyme therapy every two weeks at the hospital for the rest of his life.
But still, he greets each day with unfailing optimism and a 1,000-watt smile. “Joseph is such a brave little man. He experiences terrible reactions to his ongoing treatment, and yet he manages to stay happy. He’s so loving and smart,” says Teresa, his mother. His challenging condition doesn’t keep him from enjoying the lighter side of life, including black licorice, watching Blues Clues, playing ball and catching bubbles.
Although he can’t speak because of the trach and vent devices that keep him breathing, he’s found another way to communicate – sign language. Barely 2 years old, Joey already knows 48 signs. He’s paving the way for other children with this disease, which didn’t even have a treatment until a few years ago. Teresa says, “Joseph has taught us to never give up hope, that there is promise in the future.” That’s the mark of a hero.
Rosaunda Jackson
Rosa, 18, has an undeniable shoe fetish. Some say she wears a new pair every day. She loves movies, but not those “boring” romantic ones. Instead, it’s the action flicks, dramas and comedies that draw her attention. She also tunes in to Miami Heat’s games, listens to gospel music and likes to eat macaroni and cheese. In school, she is studying nursing with a focus on pediatrics.
Last year, Rosa’s world turned upside down after she was diagnosed with Devic Syndrome, a rare autoimmune central nervous system disorder that can cause vision impairment and paralysis. She has endured a painful spinal tap and extensive hospital stays. For a period, Rosa lost the ability to move her legs and was forced to depend on a wheelchair. She’s progressed to using a walker and soon hopes to get around with crutches. When asked how difficult her months of physical therapy have been, Rosa responds, “I like a challenge.”
Her condition has motivated her to volunteer at the hospital and inspire other seriously ill children to be strong. Rosa’s friends and family are in awe of her courage and the fact that she doesn’t ever let her situation hinder her. “She moves like a champ,” says her friend Onisha. According to Rosa, heroes are those who won’t let obstacles hold them back.
“Be patient,” she says, “be positive and don’t allow your condition to get you depressed. Be willing to work hard because the symptoms won’t last forever.”
Angelica Jolley
Angelica, 11, draws pleasure from hanging out with her family and her “bestest” friend, Merissa. She likes music by Hillary Duff, enjoys math and art, and knows a thing or two about playing the violin. If she had it her way, though, she’d spend every waking moment around horses and ride off into the sunset every evening.
At birth, she was diagnosed with Congenital Lymphedema, a malformation of the lymphatic system that causes severe tissue swelling in parts of the body. Angelica has gone through heart surgery and must visit the hospital often for treatment. It’s difficult not being able to keep up with her friends during play, or wear certain styles of clothes like the other kids. And it’s painful to know that people sometimes think she’s overweight because of the extra fluid around her abdomen. But no matter what, Angelica’s beautiful smile never stops beaming.
“She is an amazingly compassionate girl who genuinely cares about others. She has a heart of gold,” says Geneva, Angelica’s mother. Her family is grateful for all the wonderful friends at the hospital who have worked so hard to help ease Angelica’s difficult journey. Angelica says she’d like to give hope to girls and boys facing similar situations – and tell them that they can fight the disease even though it’s really challenging.
Bryant King
At 15, Bryant (who also goes by “Sport” and “Bry”) is an active student with lots of friends. He’s a student council member at school, serves as the varsity basketball manager, and likes to play football, basketball and run track. No surprise that he’s a big sports fan. When he’s not watching the L. A. Lakers, Oregon Ducks or Green Bay Packers on TV, he’s playing video games, watching movies and indulging in some ice cream.
From birth, Bryant has lived with Caudal Regression Syndrome, a rare disorder of the spine. He’s had two kidney transplants, faced 10 months of dialysis and suffers from scoliosis. But the fact that he has a prosthetic and needs a cane to walk doesn’t slow his pace.
“Bryant never says ‘why me,’ or loses his drive to participate in everything he can,” say his parents, Lisa and Steve. “He remains positive and is always encouraging to others. And he truly loves life.” Bryant would counsel others kids like himself to stay strong. “Live your life day-by-day, and don’t let others bring you down because they don’t know what it’s like. Just be brave, prove people wrong, and work hard to achieve great things… and you will.”
Eduardo Martinez
Put Eddie on a dirt bike and you won’t see him for hours, especially when he’s out riding with his father and brother on weekends. And while he used to like everything about cars, now he likes everything about motorcycles. His absolute favorite food is mashed potatoes with gravy, but he’s been known to chow on popcorn chicken, too. Eddie loves hip-hop music and is a whiz at math.
Eddie suffers from Cystic Fibrosis, a life-threatening genetic disease that impacts the lungs and affects only approximately 30,000 people in the United States. To make things more challenging, Eddie has biliary atresia, a disease of the liver. Consequently, he must undergo breathing treatments four times a day and has to be very careful about his activity levels. A hard hit to the stomach could be fatal.
His condition has taught him and his family to appreciate how truly precious life is. “He is such a sensible, good boy with a whole lot of love to give,” says his mother, Maria. Despite everything, he greets each day with no complaints. And he refuses to ever let being sick get him down or limit him, saying that a hero helps others and lives life to fullest.
Ricky Overton
Ricky, a.k.a. “Peanut,” is an effervescent kid who adores everybody. He loves to dance, watch basketball and hang out at Chucky Cheese. And he likes all sorts of music – gospel, rhythm and blues, hip hop, country… you name it. A few of the foods that really tickle his tiny taste buds are crab legs, French fries and Cheetos. As for his ABCs, he’s getting closer to perfecting them with each passing day.
When he was 1 year old, Ricky was diagnosed with Spastic Diplegic Cerebral Palsy. As a result, he suffers from acute leg pain and has trouble walking. Respiratory difficulties and seizures continue to plague his young life.
And still, his big, bright smile never loses its shine. His mother, Tyree, says he personifies the adage, “If at first you don’t succeed, try, try again.” His amazing courage and personal fortitude are proof positive that heroes really do come in small packages.
“Ricky has incredible strength and the greatest personality of all. He is oh so cute and encouraging to everyone.”
Lucero Ramirez
Lucero, 15, was an energetic teen whose antics and fantastic sense of humor captivated and entertained everyone she met. She’d dance around the house for hours on end, grooving on the music of Jennifer Lopez and Black Eyed Peas. On quieter days, she liked reading mystery novels, spending time with her friends and family, enjoying the great outdoors... just a few of Lucero’s many favorite things.
After being diagnosed with a brain tumor last year, Lucero underwent surgery, chemotherapy, radiation, extended hospital stays and pokes and prods too numerous to count. Although she missed her friends and struggled with the loss of independence and mobility, she never lost hope or perspective, and saw the importance of living in the moment. Those who were fortunate enough to know her were struck by her courageous and brave spirit – and her constant concern for making a challenging situation easier on her family.
Lucero said her illness brought her family closer together and even gave her the opportunity to meet her grandmother for the first time. When asked what advice she would give to other young people like her, Lucero said, “Don’t ever give up, spend as much time with your family as possible and don’t ever stop having fun.”
Victoria Rose Roberts
Animal enthusiast Victoria, 7, learns all she can about Mother Nature’s scaly, furry and feathered friends. She adores her cat, Mr. Teddy, and showers him with affection. And unlike most girls who love ponies, Victoria actually has one named Chocolate. She’s a big fan of the Portland Trailblazers, sandwiches from Schlotzky’s and trips to the beach or the park. Ask her what’s best about school and she’ll say, “Lunch!”
Victoria suffers from Aplastic Anemia, a life-threatening disease that occurs when the bone marrow produces too few blood cells. After 100 nights in the hospital, 40 blood transfusions and two rounds of immunosuppression treatment – not to mention the bone marrow transplant that she knows is in her future – Victoria might have a reason to complain.
But she does nothing of the sort, according to parents Charles and Jacqueline. “Victoria possesses unbelievable strength and character. She is always positive, upbeat and smiling. It’s just incredible. She never has a bad day and is more concerned about other children at the hospital than she is about herself.” As this young hero succinctly puts it, you just have to keep going and going until you get better.
Seth Rogan
Like most teens his age, Seth, 17, has a hearty appetite and rarely meets a food he doesn’t like, whether it’s Mexican, Chinese, Japanese or American. Seth’s interests are manifold. On his A-list of favorite activities are playing video games, riding his bike, reading books and collecting Oregon Ducks paraphernalia. He has two dogs, Jasper and Chet, and no shortage of best friends. At school, he enjoys history and P.E. And at heart, he’s a rocker, always turning the volume up (way up!) on AC/DC or Lynard Skynard.
Since 2004, Seth has fought the severe health challenges brought about by Acute Myelogenous Leukemia (AML). Four rounds of chemo, a 10-day stay in the Pediatric Intensive Care Unit (PICU), several bone marrow biopsies, multiple transfusions and a return visit to PICU were just the beginning. In December 2005, Seth relapsed and underwent three more rounds of chemo, a bone marrow transplant and a host of ensuing complications.
In spite of everything, Seth says he’s grateful for the many wonderful people in his life – “My family, doctors, nurses, all the kids in my little sister’s school who prayed for me every day, my friends and everyone who has supported me... they are all heroes to me.”
“Seth is an exceptionally brave young man,” says his mother, Trish. “He stays so positive and worries more about his family than himself.” To them, Seth’s incredible strength, caring and willpower make him the real hero.
Alan Ruiz
Alan, 19, is a kind, intelligent young man with interests ranging from painting on canvas and building model cars to collecting rocks and playing video games. He enjoys hanging out with his family (Mom, Dad and two sisters, Lissette and Stephanie) and his dog, Precious. And he can’t seem to get his fill of good Mexican food – or his favorite ‘70s music.
Last year, Alan was diagnosed with Acute Lymphoblastic Leukemia (ALL). His first six months of treatment were long and intensive, with complications arising from each chemotherapy treatment. For Alan, the limitations on his daily living are some of the most challenging aspects of his condition.
And yet, he finds that he has much to be thankful for. He and his family are stronger because of his disease. He touches those around him with his constant willingness to do things for others and his tremendous courage and faith. He’ll tell you that a hero is “someone who does what it takes to overcome difficulties in life.” He is a shining example of that principle.
His advice to others facing serious illness is, “Don’t let it control you. Keep on going and living the best you can.”
Jake Saejow
Jake, 7, has an active imagination that runs free when he plays make-believe and writes stories in his notebook. He enjoys school and all kinds of video games.
Despite the continuous and often painful treatments associated with lymphoma, Jake never complains. And you can be certain that whenever Jake visits the hospital (which is often), he’ll take home a bounty of new toys – rewards from the staff for being such a brave patient. Although he wishes he could play like the old days, he continues to make the best of life and enjoys every moment.
“Jake is wise beyond his years. Amazingly, he handles what he’s going through better than we do oftentimes,” says his mother, Koy. “His disease has made all of us appreciate life more and be more understanding of the many challenges people face.” In Jake’s mind, being helpful to others and loving to your family are the qualities that make a hero. His advice to other children like him is to not be scared, because it’s possible to make it through cancer.
Adisyn Sellers
Little Adi is a thrill seeker. She loves nothing better than to swing, be tossed up in the air and hang upside down. She gets a kick out of playing with her most favorite people on Earth – her sister and two brothers, and her mother says she’s enjoying learning how to walk. Adi’s especially fond of books, music and her special silky blanket.
Born with a Congenital Diaphragmatic Hernia (CDH), Adi’s lungs were severely underdeveloped. She was given only a 10% chance of surviving beyond her first few weeks of life. Because of her condition, she was placed on a heart and lung bypass machine, then a ventilator, and endured nine surgeries and multiple chest tubes – all by the time she was 4 months old.
Now at 17 months, Adi keeps getting stronger and her medical condition continues to improve. “Adisyn was a born fighter with an unquenchable will to live. She doesn’t have it in her to give up. And she’s proof to our family that miracles DO happen.”
Jay Sirimangivong
Jay’s family is from Laos. He’s a happy, loving 13-year-old who loves to play hide and seek with his older brother, Joel, and spend long afternoons outdoors. He also likes watching movies and listening to music, and there’s probably no bigger fan on earth of “The Wiggles.”
As a result of Athetoid Cerebral Palsy, Jay has been denied the ability to speak. He must eat through a feeding tube and stay in a wheelchair. Despite the challenges, Jay never gives up the fight and finds great pleasure in connecting with others. His huge hero’s heart and intense determination to live life to the fullest are what people remember most about him.
Joel says that his little brother is a constant source of inspiration to him and his family. “Jay is so smart inside. And he’s always there for me. His strength keeps me going and gets me to work harder in school and in life.”
Oliver Trasen
Oli is a dairy fiend – to him, three of the four food groups are yogurt, cheese and milk. When he’s not playing with his best friend and big brother, Jacob, he likes to look at picture books and watch Baby Einstein videos. He has a musical side, too, and spends a lot of time working on his ABCs and humming along to Mozart.
For more than a year, Oli has courageously battled Acute Myelogenous Leukemia (AML), a rare malignant disease of the blood and bone marrow. According to his mother, Robyn, many doctors didn’t think he would make it. But four rounds of chemotherapy, two bone marrow transplants and extensive hospital stays have not dented this tiny hero’s ironclad will.
“Throughout his treatment, Oliver has remained cheerful and happy. He is just a joy to be around – and so full of life,” adds Robyn. At nearly 2, Oli is just now able to explore the world outside, doing things most of us take for granted like walking in the grass and playing in the park. He embraces each new experience with exuberance and passion.
Angela Uzcanga
It’s probably a safe bet that Angela’s favorite time of day is morning, mostly because she has a profound fondness for breakfast food, especially French toast. At 19, Angela loves nothing more than being with her family and hanging out with her closest friend, Ben. Ask her to name her favorite musical group and she’ll tell you that “it’s really all about Tom Petty and the Heartbreakers!”
In October 2005, Angela received news that she had Synovial Sarcoma, a rare malignant tumor of the soft tissues. During the past year, she’s endured a number of challenging treatments, including chemotherapy and an intensive 23-hour surgery to remove a tumor on her pelvis. She has trouble walking very far and tires quickly. It takes more energy to do the simplest things.
Through it all, her incredible courage and positive attitude have been a source of inspiration for everyone around her. “I have a different outlook on life now,” she says. “I realize how great and beautiful each day is – and I know that there will be better and healthier years to come.”
She believes that ordinary people make the best heroes. When asked what advice she’d like to share with young people suffering serious illness, she says, “Just remember that no matter how scared or stressed you are, you can beat it. As long as you can hold on to that and believe in yourself, everything is easier to handle. Some news may be bad, but with bad comes better.”
Julina Vang
Nicknamed Paj dej (which means water flower), Julina enjoys all the adoring attention she receives from her parents and seven siblings. And she loves to play with toys that make lots of noise and have lots of buttons.
When Julina was a baby, she was diagnosed with a rare genetic disorder known as Smith-Magenis Syndrome (SMS), a condition that affects about 1 in 25,000 births. SMS has delayed Julina’s development, making it hard for her to walk, swallow or chew foods, or exert much energy for very long.
If she were old enough to talk, says her family, she’d undoubtedly tell you that being a hero is about staying happy and trying your hardest.
“Julina has shown us that you can be happy even in the face of so many challenges. She has helped us learn to count each day as a blessing and better appreciate the value of patience and understanding.” Her resilience and unwillingness to lose her smile are proof that even the smallest among us can be the biggest heroes.
