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2005 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 2005 Hero Kids were unveiled September 17, 2005 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon.
Here are our 2005 Hero Kids:
Rosa Alcantar
At 15, Rosa likes to go by the nickname “Rosie.” She’s an intelligent, conscientious, and caring teenager who considers her twin sister Rosario to be one of her best friends. She says she enjoys collecting Hello Kitty paraphernalia, reading autobiographies, eating her mom’s great Mexican food, and playing with her dwarf hamster, Pedro, because “he’s so cute!” She’ll quickly tell you that her favorite school subject is art and that she has an ear for punk rock and hip hop music.
Experiencing surgery, radiation, chemotherapy, meningitis and another bout of meningitis, which put her in a coma, would undoubtedly dampen most people’s spirits. But then again, Rosie isn’t like most people. Her strength, optimism and determination continually inspire her family and friends. Not to mention how bravely she handles the challenge of learning how to walk again. Rosie has this to say about living with meduloblastoma: “It’s given me more faith. It’s taught me to appreciate my family more—and the small, simple things, too.” Rosie’s character is what distinguishes her as a real hero.
Alexis M. Barber
Affectionately nicknamed Stinky by her family, Alexis never misses a chance to bust a move and start grooving to any song she hears. Like most toddlers her age, she has a big sweet tooth and can’t ever seem to get her fill of chocolate. According to her mother, Tabitha, Alexis likes nothing better than to make people laugh.
After suffering a severe burn injury, Alexis has endured 11 surgeries, so many hospital stays that it’s hard to keep track, and the emotional trauma and intensely painful process of healing from burns.
In all of this tragedy, contends her mother, Alexis has demonstrated more courage than her family thought possible. “She never lets it get her down,” says Tabitha. “She’s always happy and her level of acceptance is astounding. Even after all she’s been through, she keeps her chin up and smiles. She’s the light of my life and has taught me to stay positive.” Her sense of humor, strength and ability to look at the brighter side of life are an inspiration to anyone who meets this young hero.
Gehrig H. Baur
At the age of three, Gehrig is an active, happy, intelligent little girl with a special fondness for music. According to her family, she’s like a breath of fresh air, always quick to dance a jig, always ready to smile. Gehrig enjoys playtime with her siblings and attending Montessori school, where she spends a great deal of time mastering sign language.
Frequent hospital visits and numerous treatments, coupled with constant testing, poking and prodding, have all but monopolized Gehrig’s young life. And to date, there is no known diagnosis for what plagues her. Yet this uncertainty hasn’t dulled Gehrig’s solid character or her joyful nature. “She is a magnificent child, wise well beyond her years. Her faith and courage have taught us to be strong,” says her father, Peter. “When times get tough, when a doctor wants to examine her or a nurse takes blood, she signs for ‘prayers, prayers’ and that’s what we do.”
This tiny hero lends credence to the fact that heroes come in all ages and sizes.
Tess Beach
At nearly 11 years old, Tess is a cheerful, energetic young girl who dreams of becoming a professional athlete. She has a special talent for soccer and basketball, loves the University of Oregon Ducks and has no shortage of favorite friends, a list that includes “everyone!” she says. With two cats and three hamsters, Tess has plenty of of furry friends, too. She enjoys reading, traveling, swimming, snorkeling—and listening to all types of music. Given her good-humored, active nature, it’s easy to see why Tess names school recess and playtime with friends as her favorite activities.
When Tess was nine, she was diagnosed with a form of childhood kidney cancer, or Wilms Tumor. A battery of painful treatments and procedures—from CT scans and lung surgery to chemotherapy and a stem-cell transplant—soon followed.
But none of this could mute her courage or her determination to win the battle. When asked what advice she would give to others in a situation like hers, she says, “Relax, try not to think about it and try to enjoy yourself even though you’re feeling bad. Find ways to have fun.” Her mother, Jennifer, says she is so proud of how bravely her daughter has dealt with so many serious challenges. “Conquering something and feeling great about it” is Tess’s definition of a hero. Her family knows of no other person who puts this definition into action better than Tess herself.
Kimberly Briggs
Nine-year-old Kimberly—or Kim, as her friends call her—is crazy about kittens and ferrets. She has several of her own. For most of her young life, Kimberly has enjoyed skating, swimming, and playing golf and softball. She has quite a healthy appetite for her favorite food, tacos, an ear for all kinds of music, and a love of the arts. At school, she excels in math, reading and spelling.
Although quadriplegia keeps Kimberly from doing the things she used to do, it hasn’t changed her courageous heart and incredibly upbeat attitude. “After everything she’s faced, she still stays so positive and won’t give up,” says her grandmother, Gloria. She continually draws strength from her ironclad will and is improving by the day.
Jessica Butler
Jessica is a fun-loving 12-year-old who answers to the nicknames “Sweetpea” and “Peaches.” She has a palate for wild duck, goose, shrimp and clams. Jessica excels in science at school, has a penchant for art and soccer, and enjoys listening to the sounds of pop star Gwen Stefani. And she never misses a chance to shower loving attention on her dogs, Buddy and Max. Having been diagnosed with Acute Lymphoblastic Leukemia (ALL) in 2004, Jessica is no stranger to continuous hospital stays and the rigors of cancer. As Jessica puts it, “fighting the sickness after chemo is one of cancer’s most difficult trials.”
Like a true hero, Jessica takes these challenges head-on. Even when she’s not feeling well, Jessica never loses her generous smile. Her wonderful outlook on life and bright spirit lift everyone around her. “Jessica is so full of life you can’t help but be inspired by her. She’s so strong—and refuses to let this disease stop her joyful nature,” says Sue, her mother.
When asked what advice she’d give to others in her condition, Jessica says, “Take life as it comes, keep your head up and always keep smiling.”
Enseningan Epel
Her friends at school and the hospital know her as Enseni. But her family prefers to call her “Nikes.” Originally from Truk, a tropical island region of Micronesia, Enseningan’s family is blessed with many children (six boys and four girls in all!). She and her siblings can pass hours playing together, and love singing songs in their native tongue, Trukese. At school, Enseningan loves to study English and has a special flair for writing. Considering her Pacific Island background, it’s no wonder she loves to eat fresh fish.
Diagnosed last year with Aplastic Anemia, a bone marrow failure syndrome, Enseningan, 15, must battle a suppressed immune system, receive frequent platelet transfusions, and undergo blood checks on a weekly basis. Because of her condition she has experienced a seizure, some memory loss and learning difficulties.
Through it all, say her parents, Enseningan stays strong. “Even when she feels weak, she still tries so hard.” With her loving ways and unbending courage, this young lady sets an incredible example for her siblings. To Enseningan, a hero is someone who can be brave in any situation, a person who fights for something good.
Teresa Marlene Fuentes
Twelve years old and lovingly called “Sweetums” by her family, Teresa is an extraordinary inspiration to anyone fortunate enough to know her. She’s a whiz when it comes to spelling bees and language arts class, has a liking for Mexican food and country music – and especially enjoys basking in the sun of her hometown, Madras.
The fact that Teresa suffers from ventilator-dependent quadraplegia, with no movement in her arms or legs, hasn’t stopped this young hero from pursuing her greatest passion – painting. By holding the brush in her mouth, Teresa painstakingly transforms a canvas into an expression of the beauty she sees in everyday life.
Through her art, she demonstrates not only creativity, but her enduring sense of determination and courage. “Teresa is a very brave person who is also kind and generous. Her greatest gift is her willingness to fully participate in life,” say her parents, Laura and Willy.
As for Teresa’s artwork, one of her paintings is hanging in the Pediatric Services of America’s national office in Atlanta, Georgia. Today, she continues to refine her skills. Because as she’ll tell you, there’s no reason to be bummed out about life when you’re doing something you love.
Gabriel Gonzales
Pizza and cheeseburgers don’t stand a chance around Gabe, 18, whose impressive ability to devour his two favorite foods in two seconds flat is widely revered by his circle of family and friends. When asked to name the activities he likes most, Gabe lists Nintendo, soccer and hanging with friends. His taste in music runs the gamut, from R&B and rap, to good ole’ rock and roll.
To date, Gabe has dealt with a horde of surgeries and exhaustive treatments for osteogenic sarcoma, the most common form of bone cancer in children today. Although his illness and ongoing hospitalizations often keep him away from school, his family and his friends, Gabe says he feels grateful that his family has become much closer through it all.
He advises other young people facing a similar situation to “research your illness and learn as much as you can about it. Be sure to talk to your family about things, stay strong and, most importantly, never give up.”
Jose Hernandez
Jose is a bright 13-year-old with an affinity for mathematics, especially fractions. Music, art, video games and the Portland Trail Blazers are also among his long list of favorites. If Jose had his way, he’d probably dine on ribs and pizza every night.
Since 1998, Jose has battled the many complications of Dermatomyositis, a severe muscle disease, and anemia. Ongoing treatment and medication, monthly overnight hospital stays and surgery have become commonplace for him.
When asked what his challenging condition has taught him and what advice he’d give others facing tough times, Jose says this: “Believe in yourself, your goals and then try your best to work for what you believe in.” Jose adds that being confined to a wheelchair has given him a new perspective on life and made him a better, nicer person. His mother, Esther, is amazed by his strength and says he is nothing if not a fighter.
Jackson Russell Hill
Jackson, a.k.a. “J-man,” was an energetic 12-year-old with an unflappable willpower. Since diagnosed with Osteogenic sarcoma in 2004, Jackson had undergone eight months of intensive chemotherapy, coupled with major limb surgery, followed by exhaustive physical therapy. Less than a year after diagnosis, recurring tumors led to a leg amputation and lung surgery to remove more tumors.
Learning to walk with his new implant had been one of the greatest challenges for Jackson. And yet he never let the situation get him down or diminish his love for the finer things in life—like Italian food, classic rock, building Legos, playing with friends, and going to the movies.
“Jackson maintained an unbelievable faith that he would beat this disease. He had plenty of opportunity to complain but he chose not to,” says his mother, Melissa. “It’s amazing to us that Jackson had been able to accept all of his ‘bad’ news and keep plugging away towards recovery. He is so inspirational, so courageous—and we are extremely proud to be his parents.”
Taylor Jackson
Four-year-old “Tay” gets a kick out of tea parties, dollhouses, treasure hunts, dancing to Disney songs, and playing hide and seek. She has a best friend named Holly and loves all animals, especially her cat, Rico, and fish, Bluey. Her mother, Shelley, says chemotherapy has created a few odd food cravings for Taylor, including a taste for pickle sandwiches and sushi.
Last year, Taylor was diagnosed with Acute Lymphoblastic Leukemia (ALL). Her treatment has been long and intensive, including 14 different chemo drugs, multitudinous daily pills, 26 spinal taps, and monthly steroids that wreak havoc on her body.
What continually amazes Taylor’s family is the young girl’s strength of spirit and incredible sense of humor. On the day Taylor lost all of her hair because of chemo, she flashed her contagious smile, put her hands on her head and said, “Look at me, I’m a basketball!” This hero has taught her family that laughter is great medicine.
“Despite the issues she has faced, Taylor is always doing something to make others feel better,” says her mother. “It’s never about her. She wants to make everyone else as happy as she is. She continually puts us in awe with her compassion and gift of laughter.”
Michael W. Libro
Michael, 13, really knows his way around the soccer field. In fact, he’s never met a soccer ball he didn’t like. His favorite food is macaroni and cheese; favorite school subject, art. When asked to list his best friends, Michael rattles off several names, including Dickens, his loyal canine buddy who trots behind him everywhere he goes.
Since 2003, Michael has courageously battled Acute Myelogenous Leukemia, a malignant disease of the blood and bone marrow that strikes an estimated 11,000 Americans annually. Last year, when chemotherapy failed, Michael underwent a stem cell transplant. After a relapse several months ago, Michael is now awaiting a donor lyphocyte infusion.
Michael says that living with AML has given him the opportunity to do some special things, like creating a Nike shoe to help raise money for a local Children’s Hospital where he was treated. “Since Michael has been diagnosed, he’s held onto his faith and happiness,” says Lorry, his mother. “He is such a brave person. When you see Michael today, you notice him by his smile.”
What is Michael’s advice to others like him? Stay strong and positive.
Jamarcus Tre' Macartney
“Caring, conscientious, considerate, respectful and fun.” These are just a few words that Tre’s elementary school principal uses to describe this incredible 10-year-old boy whose bright attitude, warmth and wonderful sense of humor touch all the students and teachers around him—and serve to make their school a better place.
He loves cheesy enchiladas, Legos, reading, writing, and playing his Gameboy. He can rap with the best of them and shines in math and history.
From the outside, you’d never suspect that Tre’ has been battling Hemophilia since birth. For him that means repeated and frequent bleeding episodes, acute pain from the damage his bleeds cause, the infections he fights, daily needle pricks—and a lot of missed school.
And yet Tre’ never loses sight of the good in every situation or puts himself first, says his mother, Sandy. “He’s always laughing and joking, always looking out for others—even when he is very sick.” Sandy adds that Tre’ has a huge soft spot for his doctor and nurses and, like them, really cares about helping those in need.
Ask Tre’ what he would tell another boy or girl in the same situation and you’re likely to hear, “Don’t stop smiling or having fun!”
Phoebe Rose Mattera
Photography, painting, filmmaking and fashion design rank high on her list of preferred interests—15-year-old Phoebe clearly has an affinity for the “artist’s way.” She also loves her toy poodle, Audrey, Krispy Kreme donuts, hip music groups like Zero 7 and Coldplay—as well as school subjects like History and English. But most of all, she loves helping people and finds great satisfaction in volunteer ministry.
Since Phoebe was six years old, she’s been fighting the daunting challenges of Cystic Fibrosis. Her mother, Amy, says Phoebe has faced multiple surgeries, bad news, chronic hospitalizations, constant pokes and prods—all with the quiet courage and true grit of a hero. She loves life completely and has never let her disease change that.
To Phoebe, a hero is someone who inspires and encourages others to do good things. “I’m hoping I can have that kind of positive effect on people.” She urges teenagers like her to keep an optimistic outlook, stay determined to live life, and most importantly, take it day by day. “You’d be surprised what a great change those things can create for you.”
Alexis Moldovan
At 14, Alexis (or “Lexi” as her mother calls her) was a spirited young lady with a soft spot for all creatures in the animal kingdom, large or small. Her own collection of scaly, feathered and furry friends included a cat named Bobo, a turtle and a bird. Her mother Lisa points out that Alexis also had a myriad of interests that ranged from the arts to music and more.
The constant challenges and difficulties brought on by Crohn's disease, a chronic intestinal disorder, never kept Alexis from courageously facing each day, setting ambitious goals and moving forward in life. “She had 33 surgeries in all and yet her drive to succeed kept guiding her through the worst times. She was a tough pistol in a small package—and her strength amazed everyone,” says her mother.
To Alexis, being a hero meant that you wouldn’t let disabling problems weaken your resolve to beat the odds. She lived by that brave sentiment each and every day.
Graham Roderique & Taylor Olsen
Graham, Taylor’s twin brother, shares his sister’s disease. And he also shares her love for music. You’re sure to see his eyes light up whenever he hears “Row, Row, Row Your Boat.” He likes hot dogs, ice cream and playing outside. Before he was diagnosed with MLD, Graham (otherwise known as “Bubba”) liked nothing better than spending what seemed like endless hours swinging at balls in the yard.
Graham’s unfailing courage, strong will and kind heart amaze his parents on a daily basis. “When Graham was struggling to walk, he would fall over often, but never complain. He’d get right back up and try again and again. He’s a fighter,” says his mother Kirsten. His incredible smile never ceases to charm the doctors and nurses, who quickly comment on what a happy little boy he is. Like his sister, Graham has shown his parents how important it is not to take life for granted and enjoy every day.
At just three years of age, Taylor (or “Tay Tay”), is a delightful little girl with an infectious smile that can brighten anyone’s spirits. She would happily listen to “Twinkle, Twinkle Little Star” and “You Are My Sunshine” a thousand times a day. Parents, Kirsten and Ian, say she loves dolls, coloring, painting, picture books – and snacking on watermelons, blueberries and cantaloupes. Last year in Black Butte, she developed a fascination with horses after riding Pete, a miniature pony.
Because of Metachromatic Leukodystrophy (MLD), a genetic disorder, Taylor has lost the ability to crawl, talk and do the everyday things she enjoys. Painful muscle spasms often wreak havoc on her small body.
But her wonderful, gentle presence and amazing courage persist. “Taylor has accepted her condition without one complaint or fuss,” say her parents. “She is a beautiful, sweet, brave soul whose unconditional love has touched many people.” Taylor has taught her family to live in the moment and be thankful for the small things.
Ivy Jean Pantoja
Ivy, 11, has always been an active little girl with a dramatic flair. It’s no wonder that acting and physical education are some of her most-loved activities. Although being confined to a wheelchair has put some of Ivy’s favorite interests on hold, it hasn’t once lessened her daily determination to become strong enough to walk again.
Diagnosed in 2003 with a malignant brain tumor known as a medulloblastoma, Ivy has endured more than her fair share of exhaustive treatments and therapies. Her family is amazed at how Ivy’s strong sense of faith has never once wavered in the fight. “She has taught us about the importance of always being positive and thankful no matter what the situation is,” explains her mother, Pilar. “Ivy doesn’t ever look back and refuses to give up.”
With her courage and kind heart, Ivy sets a shining example for others to follow—and that’s the fundamental quality of a hero.
David Stanescu & Emanuela Stanescu
Like his 12-year-old sister, Emanuela, David suffered serious injuries from the tragic car accident that took the lives of both his parents and three other sisters last year. According to his grandmother, Floare, three-year-old David struggles with learning how to walk again, but even at such a young age, remains resolute in his determination to win his arduous battle.
Day after day, David’s brave heart and friendly nature have guided him through the darkest moments as he tries to not only recover physically, but grasp the fact that his mom, dad and sisters won’t ever be coming home again. In spite of it all, he continues to wear a big, beautiful smile, greet everyone he knows with open, loving arms, and sing joyful songs that help brighten his family’s sorrowful time. It doesn’t take long to see that David’s strength of spirit is the mark of a true hero.
Last year, at age 12, Emanuela was involved in a terrible car accident that left her paralyzed from the waist down and deprived her of the ability to talk. The tragedy also claimed the lives of both her parents and three sisters, and seriously injured her younger brother, David.
Despite the daunting challenges and her great loss, Emanuela, or “Ema,” courageously strives to grow stronger by the day, and possesses an astounding level of personal fortitude. At the hospital, she quickly took to learning how to communicate through sign language, and her body continues to show promises of improvement. She maintains her love of reading, drawing and playing the piano.
Her grandmother, Floare, says Ema is an incredibly brave girl, who doesn’t have the slightest idea of what it means to “quit.” Ema’s willingness to accept her condition, while still working hard to get better every day, is a constant source of inspiration for her brothers and her grandparents, all of whom share her great sorrow over the untimely loss of their loved ones.
Lily Shaw Stuart
When Lily was just five days old, she was diagnosed with a rare, genetically linked metabolic disorder known as Citrullinemia—a condition that affects about 1 in 30,000 people. By the time she reached two months of age, Lily had spent half of her life in the Neonatal Intensive Care Unit at a local Children’s Hospital.
During her lengthy hospital stay, Lily, (a.k.a. Tiger Lily and Lily Bug), underwent a laundry list of treatments, enduring everything from hemodialysis and daily metabolic tests, to a liver biopsy and a feeding tube in her stomach. As soon as she’s old enough, she’ll receive a liver transplant to cure her disease.
Through all this, Lily has never stopped fighting for her life. Today, her prognosis looks good and she continues to flourish. The incredible courage and resilience that Lily has shown are proof that even the smallest among us can be the biggest heroes. Lily remains a wonderful source of inspiration for her parents, her sister and her brother.
Shawn M. N. Taison
Affectionately known as “Shawny Boy,” this fun-loving, outgoing, and lively seven-year-old enjoys collecting Hotwheels, taking care of his pet fish, Rocky, and grooving to his hip-hop music. He’s a big fan of McDonald’s fries and corndogs, and his best sports are basketball and golf.
Acute Myelogenous Leukemia, high-dose chemotherapy, a relapse, radiation, more chemotherapy and a bone marrow transplant haven’t stopped Shawn from staying strong and optimistic. “No matter how hard it has been for him, he remains positive, bravely getting through this hardship and always putting others before himself. He is so loving and caring,” says Idalynn, his mother.
Shawn believes a hero is someone who is kind and courageous, someone who is always looking out for others. His family sees those heroic characteristics in him every day.
Samantha Wheeler
Samantha used to spend hours upon hours playing with puzzles, coloring and drawing. What she liked most about her favorite food—spaghetti and meatballs—was twirling noodles with her fork. Disney movies, her cat Ethel and Walt Disney’s Shrek CD soundtrack were also among her list of favorites things. And given how much she absolutely loved swim class, her mother, Jennie, is convinced that Samantha was part fish.
Originally diagnosed in 2003 with a fast-growing highly malignant tumor, Rhabdomyosarcoma, Samantha relapsed last fall. Needless to say, needle pokes, painful procedures and arduous treatments were a regular part of Samantha’s young life.
In her four short years, Samantha possessed a certain, quiet courage far beyond her age. According to her mom, she remained brave, positive and happy throughout the difficult battle—and was always ready to play. “Samantha was a fighter and wouldn’t let cancer set her back. She lived life to the fullest. And she will forever be remembered as a beautiful little girl who loved everything and all other people.”
Andrew Williams
Andrew is nearly two years old and loves playing outside with his older brother Austin, especially when it involves fun-filled rides in his wagon. His mother, Jennifer, says he simply adores his nurses and doctors at the children’s hospital and never misses a chance to offer a big, happy wave whenever he catches sight of them. Nicknamed Drew by his family, this brave young hero constantly wears a grin so broad that it brightens any room he enters—and warms the heart of anyone who knows him.
Even after long hospital stays, surgery, and losing the ability to walk or crawl because of an astrocystoma tumor in his spinal chord, Drew’s spirits remain exceedingly positive. “Drew has been through more in one year than we could have ever imagined. And yet he has overcome all the serious obstacles that have been put in his path—without ever losing the smile on his face,” says Jennifer. “His strength and courage have kept us going.”
Logan A. Williamson
Like most babies his age, Logan loves nothing better than getting his hands on whatever’s in reach. Give him a dishwasher or fridge to explore and he’s in hog heaven. He also enjoys playing with water and dirt, the perfect ingredients for making mud pies. And he’s always easily captivated by musical toys of any kind. Living with Oxalosis, a rare genetic disorder that affects the kidneys, hasn’t dampened this young hero’s fabulous attitude and zest for life.
During the past two years, Logan has endured a failed liver transplant, followed by a successful one, dialysis at the hospital four times a week, dialysis at home and a recent kidney transplant.
But still, Logan faces each day with a beaming smile on his face. According to his mother, Jennifer, Logan is the most courageous child she’s ever known. “He has been put through so much without ever having one complaint. His spirit and determination to live give his family the strength to help him through these difficult trials.” Logan’s personal fortitude, says his family, will help him come out on the other side.
