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2004 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 2004 Hero Kids were unveiled September 25, 2004 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon.
Here are our 2004 Hero Kids:
Luke Blagg
At 21, Luke is an engaging young man with a quick wit and joyful nature. He’s one of five siblings and the only male in the bunch. Ask him to choose a favorite food and he’ll pick potatoes, “Because you can make them 4,376 different ways!” Ask him to name his favorite pets and he’ll laughingly say his nieces and nephews, “Because they’re just so much fun.” Luke loves the outdoors and all types of music.
Having been diagnosed with Hodgkin’s Lymphoma and Evans Syndrome in 1999, Luke has gone through five years of intensive treatment, including chemotherapy, radiation, a stem cell transplant, then more chemo and radiation, a splenectomy, a lung biopsy… and now he’s awaiting a bone marrow transplant.
Throughout treatment, his sense of humor and faith have guided him. He jokingly admits that hospital food poses one of the biggest challenges – and that his handwriting was much better before he got sick. “Luke’s very upbeat and happy. He still has a life in spite of his disease,” says his mom, Sharon.
Luke says he feels fortunate for what he’s learned on his journey – and would offer this advice to others, “Realize how precious life is, spend more time with loved ones, have faith and try not to take life too seriously.”
Kody Brissette
At 19, Kody is a fun-loving, energetic young man with a list of personal interests that runs the length of his arm. Right at the top of that list is music. Strumming on the guitar and writing songs, to be specific. Kody also likes to go bowling, play miniature golf, chow down on filet mignon and watch movies. Ask around and you’ll find that his friends are as numerous as his favorite interests and activities.
For Kody, being born with Cystic Fibrosis, a genetic disorder for which there is no cure, has led to extended hospital stays and difficult treatments, including a recent double lung transplant. But the challenges of his illness haven’t kept this young hero from staying true to his self-prescribed motto, “Keep your chin up and make the best out of what life gives you.” So it probably comes as no surprise that Kody is well-known for his incredible ability to meet each day with a big grin. What he values most are family, friends and good times.
Throughout his courageous journey, Kody says he feels blessed to have learned so many valuable life lessons and met so many wonderful people along the way.
Elyse K. Dehner
For 12-year-old Elyse (a.k.a. “Bunny”), taking adventure walks in the woods with her dog, Fiona, has long been a favorite pastime, along with riding horses, playing soccer and writing poetry. Her mom, Laura, says that cheese – in the form of pizza and lasagna – ranks high among Elyse’s favorite foods.
On November 26, 2003, Elyse suffered a traumatic brain injury that put her in a coma for two and a half months. Today, after three neurosurgeries, one orthopedic surgery, and continuous physical, occupational and speech therapy, Elyse is learning how to walk and talk again.
Despite the hardships and painful rehabilitation, her perseverance and incredible sense of humor have stood out above all else. Already, she’s making huge strides toward recovery and is dreaming of future plans to visit Africa, where the inconveniences won’t seem so inconvenient given what she’s been through.
Ask her what it means to be a hero and Elyse is quick to say that heroes are people who “never give up and are willing to risk their own well-being for the sake of another.”
Brittney Evans
Brittney – or “Britt” for short – is a vibrant 14-year-old who admits to having just a tiny weakness for ice-cream and cute boys. She adores her dog, Jackson, and cherishes her family and many friends. Inquire about her favorite subject at school and she’ll jokingly say, “It’s lunch!”
Since being diagnosed with Hodgkins and Non-Hodgkins lymphomas in 2001, Brittney has grown all too familiar with hospitals, painful needles, constant medical attention and harsh chemotherapy. Through it all, Brittney’s wonderful sense of humor has served her well, and the future looks bright.
Her resilience and great appreciation for life have inspired everyone who is fortunate enough to know her. Nowhere is this fact more apparent than in the words of her family: “Regardless of what she had to endure, she met it head-on. She faced her fears with a gentle spirit and astounding courage. We are awed by her strength.”
To Brittney, a hero is someone who does great things when no one expects them to be done – someone people look up to. Her advice to those confronted with challenges: “Don’t ever give up and always fight to win.”
Jesse Lee Fay
When Jesse was just four years old, he aptly earned the nickname, “Fearless Fay,” after winning his very first competition in the fast growing sport of Quad Racing. According to his mom, Heidi, this determined five-year-old is not only fearless in the way he races, but in the way he lives life everyday – with strength and determination.
In August 2002, Jesse was diagnosed with a very rare combination of blood disorders known as Monosomy 7/JMML. During the past two years, he’s endured arduous rounds of chemotherapy, heavy radiation, a splenectomy, a bone marrow transplant, constant pokes, prods and extended hospitalization.
Day after day, Jesse’s sense of faith has guided him in the fight. He loves with all his heart, plays with all his might and refuses to give up – even in the face of seemingly overwhelming odds. No one who knows “Fearless Fay” would expect anything less from this courageous boy.
Lauren Forkner
At 19, Lauren is destined to be a world traveler. By all accounts, she’s off to a good start, having already visited Mexico, Canada, Belgium, England and France. Next on her itinerary is the Caribbean. Small wonder Lauren has a real affinity for photography, a natural complement to having the “travel bug.”
These days, Lauren spends a great deal of time studying to become a dental assistant, something she manages to fit in between the many hospital visits, exhausting medical treatments and lung “clean outs” she must endure due to Cystic Fibrosis.
One of Lauren’s many strong suits is the ability to face challenges with a positive attitude. Her mother proudly contends that “Lauren’s strength – her ability to live in the moment with such grace and joy – has taught our family many valuable lessons about life. She makes us, as her parents, stronger!”
Perhaps Lauren herself sums it up best: “Accept what you’ve been given and be grateful for what you have. Live life to the fullest and try your best not to take life too seriously.”
Holly Gamble
When Holly was just two years old, she was diagnosed with AIDS. Today, at 14, Holly has spent much of her life going in and out of hospitals. Despite the many complications of her illness, this determined young teen enjoys life to the fullest.
Known as “Hollywood” by her friends and family, Holly exudes a certain dramatic flair that shines whenever she dances and sings. At school, she strives to excel in her favorite subjects, English and Creative Expression. She loves poetry, her cat Bubba, and talking online to her friends. Her most important interest of all is speaking to others about AIDS.
“Holly goes out of her way to encourage young people with illnesses like hers to keep their heads up and never, ever give up. She is so very strong in what she has to deal with day by day,” says her mom, Sally. Holly’s courage in the face of adversity never ceases to amaze those who are close to her.
Heather Garcia
Eight years ago, Heather was diagnosed with Hidradenitis Suppurativa (HS), a painful, chronic condition that produces recurring lesions or “non-healing wounds” on the body. In addition to HS, she also suffers from Crohn’s disease and Diabetes.
During surgery a year ago, Heather experienced hypoxic encephalothapy, or lack of oxygen to the brain, and was put on a ventilator for two weeks. Once she regained consciousness, doctors discovered that her cognitive functioning and short term memory had been compromised. She says that some of her biggest challenges are having to learn to walk all over again and asking people to repeat things, not to mention multiple surgeries and the painful treatments for HS breakouts.
Amid it all, 18-year-old Heather possesses a keen appreciation for life that many others do not. She finds pleasure in going on walks in the field near her home, taking time to draw and paint, listening to the soothing sounds of classical music, or playing with her foster family’s four cats.
Heather believes a hero is someone who has overcome a tough situation in a “kind, friendly, caring and courageous” way. When asked what her challenges have taught her, Heather unequivocally states “empathy for others.”
Brooke Hansen
A day of dress-up, Barbies, baby dolls, crafts and bikes – that’s the kind of day that would leave five-year-old Brooke tickled pink. But for an active, energetic girl like Brooke, her “favorites” certainly don’t stop there. Add to the list dancing, swimming, snow skiing – and that’s just the start!
Last year, Brooke was diagnosed with high-risk Acute Lymphoblastic Leukemia (ALL), cancer of the blood and bone marrow. Following three and a half months of chemotherapy, a bone marrow transplant, a relapse and another round of chemotherapy, Brooke still awakens every morning with an infectious smile on her face and an incredible zest for life. She misses dance class and preschool, but enjoys getting to see all the kind doctors and nurses at the hospital.
Her mother, Amber, says Brooke is always quick to remind her “that today is going to be a good day.” Brooke’s sense of peace about life and her caring, joyful spirit are instantly palpable to everyone who crosses her path. Even when chemo caused her hair to fall out last St. Patrick’s Day, she smiled and exclaimed – “It’s St. Baldrick’s Day!”
Brooke herself believes the true measure of a hero lies in his or her ability to be “strong, brave and happy.” She certainly meets that mark and more.
Nikolette Harris
At 10, Nikolette has accrued a number of fitting nicknames – Nicole, Nikki, Sugarplum, Sweets and “Sista.” She’s a sucker for spaghetti and pizza – and has been known to run circles around any soccer or softball player her age. A smart, industrious girl, Nikolette can often be found reading books in the school library or studying math, one of her favorite school subjects.
Originally diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of two, she relapsed last summer at age nine. Needless to say, pokes, prods, painful procedures and treatments have long been a regular part of Nikolette’s life.
According to her family, Nikolette never loses her beautiful smile or ability to share her loving heart with others. She has an extraordinary capacity to see the good in everything – no matter what –and to teach others about the power of courage and grace.
To Nikolette, a hero is a “strong fighter against scary and hard times…someone who acts positive even when things are not.“
Matthew James Hermann
Little Matthew has enough joy in his heart to go around the globe twice, even three times, says his mother, Summer. When he heads down the halls of the hospital, his amazing grin brightens the faces of others passing by. “Matty is so very special. He loves everyone, especially nurses – and his big brother Isaac.” Word is that Matty enjoys just about everything, too – books, music of any kind, the drums and guitar, oatmeal, ice cream… you name it!
Matty was born with Trisomy 21, or Down Syndrome. Since his birth two and half years ago, Matty has experienced severe complications brought on by a compromised respiratory system. He’s had over 28 clinical cases of pneumonia, endured a tracheastomy and gastrostomy, and suffered minor hearing loss.
Needles, tubes, medications and repeat hospital visits have become par for the course. Not once has his sweet and happy disposition changed. At the hospital, Matty’s wide smile and contentment touch all those around him. In the midst of difficulty, pain and struggle, Matty continues to find laughter and happiness day after day. He’s a source of strength for his entire family. “We feel blessed for the lessons Matty has taught us – and have gained a newfound appreciation for what really matters in life. Matty has such a forgiving spirit, a heart so full of love…we believe he is truly a gift from God.”
Eric "Evan" Carrasco Hernandez
At just a little over one year of age, Eric has already fought a series of daunting infections and endured rounds of chemotherapy as a result of Acute Lymphoblastic Leukemia (ALL). Yet his smile never fades. Day after day, this brave little boy manages to find joy in the simplest things – like munching on Cheetos or making a mess with his toys. Animals, insects and rhythmic music of any kind delight him. And he’s quick to giggle whenever he hears his voice amplified on his toy microphone.
Eric’s beautiful, joyful spirit is what helps his parents press on. “He teaches us to live with hope, have faith and continue to grow each day. He has undergone and overcome so many difficult challenges and complications with such grace.” Eric continues to show his family how important it is to value life and look at everything with optimism. And he’s proof that the powerful lessons of courage and hope can be taught by even the youngest among us.
Ashley Herrera
Ashley was born with a penchant for music. She sings and plays the drums, piano and guitar. As a huge fan of hip hop, Ashley loves to cut loose and “get funky.” Living with Goldenhar’s syndrome, a rare genetic disorder that often results in skeletal and facial abnormalities, can’t keep Ashley from dancing to the sounds that fill her heart with joy.
To date, four-year-old Ashley has undergone more than a hundred surgeries. For a long time now, she’s had to live with a gastronomy tube and a breathing tube. Once, during a course of treatment, her heart stopped beating. Despite being unable to eat, talk or breathe like others, Ashley’s bright spirit and strength endure without fail.
Her family is amazed at Ashley’s kind heart, her courage and the unlimited amount of love she shares with those around her. When asked to describe the qualities of a hero, they don’t have to look very far for the answer.
Ruth Lee
At 6, Ruth is a delightful, jovial little girl who greets every day with a big, broad smile and loves to joke around. No wonder her family calls her “Happy.” When asked what makes Ruth happiest of all, her mother, Elizabeth, replies, “Puppies, pizza, playtime and family.” At school, Ruth enjoys making art and drawing funny characters in all shapes and sizes.
Even though she can’t walk, jump, run or skip like her brothers and sisters and other children, Ruth refuses to let that stop her. “Ruth has never quit smiling – or trying her best at whatever she does. She’s constantly happy, even when everyday things like climbing stairs become too hard for her,” says her mom.
As anyone who knows her will attest, Ruth has a knack for making people feel warm inside. Her kind-hearted, forgiving nature and joyful presence quickly put others at ease. Ruth’s sage advice to those facing tough times is this: “Never give up, always get up and try, try again.” It’s plain to see that Ruth lives by her own words.
Christian Long
With his courageous, buoyant spirit and heart that overflows with kindness for everyone he meets, eleven-year-old Christian (or “Chris”) has inspired many people. Living with Moebius Syndrome, an extremely rare condition that causes facial paralysis, doesn’t stop Chris from maintaining a positive outlook that’s extraordinary by any standard.
Chris gets a big kick out of playing video games – especially Sonic Heroes – and racing his remote control car outside. He’s a whiz at math and loves anything musical.
Diagnosed in 1995, Chris has undergone a battery of painful jaw surgeries. Throughout years of treatment, he’s had four separate jaw distractors inserted to help lengthen his jaw, each of which was in place for three to five months.
To Chris, a hero is a brave person who stays strong, no matter what the circumstances. His parents are constantly moved by Chris’s strength and sweetness. “He never lets anything get him down. He’s the bravest boy we’ve ever known.”
Marcella Macready-Santos
Five-year-old Marcella may be small for her age, but her zest for life most certainly is not. The same goes for her dynamic personality and desire to learn. Trips to OMSI, the Children’s Museum and the park are among her favorite activities. Among her favorite playmates are her siblings, Amanda and Julian, her best friend Maddy, and her baby doll “Maya.” Marcella also loves spending time with her speech therapist and playing in the dollhouse at school.
In 2000, Marcella was diagnosed with Costello Syndrome, a very rare genetic disorder affecting both physical and mental development. Today, there are only about 150 reported cases worldwide. For Marcella, her diagnosis means a lot of testing, poking and prodding, along with ongoing speech therapy, occupational and physical therapy, and multiple hospitalizations.
According to her mother, Dawn, many thought Marcella would never walk or talk. “But she’s doing it all. She’s even learning English and Spanish.” What strikes her family and her teachers most is Marcella’s unwavering persistence in the midst of so many challenges. “Marcella tries hard at everything – and won’t let anything stop her. Her ‘can-do’ attitude makes her a great role model for other kids.” She’s a testament that heroes come in all sizes and ages.
James McDowell
Tell James a knock-knock joke and chances are he’ll know the answer – or can quickly find it among the pages of his prized joke collection. At 15, James (known to many as “JR”) is a voracious reader, and he says the 4th volume of “Harry Potter” is his favorite book. He’s a long-time baseball enthusiast and roots for the Seattle Mariners. He loves to laugh just as much as he loves to eat jalapeno poppers, pizza and homemade spaghetti.
James Suffers from Neurofibromatosis Type II, which produces tumors on the spinal region, brain and body. He is quadriplegic with no sensation or movement below mid-chest. James admits that it’s difficult to move parts of his body, like his left arm, and to undergo so many intensive surgeries. But at the same time, James says he enjoys living with other kids at the Providence Center for Medically Fragile Children, especially since he gets to make them laugh.
To the people lucky enough to know him, this young hero is a constant source of delight and inspiration. “He is so very special, with a warm and wonderful sense of humor. He takes one day at a time and enjoys the things that he can do.” James’ idea of a hero is “someone that helps people in need and also does nice things, brave things.” What would he tell others facing hard challenges? “Be happy how you are and be glad you are alive.”
Mario Ramey
Nicknamed “Rio” by his mother and sister, Mario is nothing if not a fighter. Diagnosed last year with Nasopharyngeal Carcinoma, a rare form of cancer, Mario, 11, has gone through intensive radiation and chemotherapy treatments. As a result of his disease, Mario suffers hearing loss.
He loves baseball, Playstation games and tacos. Apparently, like many boys his age, he has a soft spot for flashy, pop-star Beyonce Knowles.
Above all else, Mario is known as a very caring child who is quick to love, laugh and bravely weather the storm. His strong sense of hope and faith have carried him far in the fight. Mario’s mother, Antoinette, is constantly amazed at how deeply her son cherishes every moment.
Monica Cervantes Ramiro
Like a lot of babies her age, Monica loves to take naps, listen to music, watch everything that moves, and receive lots and lots of warm hugs and kisses. Where Monica differs is that she was born without a whole heart and with her stomach twisted around her intestines.
At just six months of age, little Monica is no stranger to hospitals, daunting treatments and constant medical monitoring. After suffering a heart attack, she has already undergone one cardiac surgery and still faces more surgical procedures to help correct her condition.
Through all of this, says her mother, Monica has never stopped fighting hard for her life. Today, she continues to heal and grow. The courage and resilience Monica possesses at such a young age remain a profound source of inspiration for her parents, her two sisters and her brother. According to them, “We are all better people because of Monica.”
Kenneth Schroder
A year after he was born, Kenneth was diagnosed with Cystic Fibrosis, a genetic disorder that has no cure. Now, at 18, Ken is an impressive young man who’s spent more than a decade of his life traveling to places near and far as an “Army brat.” Despite the long years of medication and therapy, Ken has never ever complained about treatment or even having the disease itself, says his mother, Grace. “I know a lot of people who would have given up, but not Ken.”
Throughout the hard times, Ken has remained remarkably optimistic, always keeping up his spirit, attitude – and his studies. He’s admired by his friends and family for his deep appreciation of all that is beautiful in life. This explains why creative endeavors come easily to Ken, a talented artist who spends a lot of time drawing.
Ken says a hero strives to “help out others whether they need it or not.” And he’s particularly grateful for the doctors, nurses and friends who have helped him out along the way.
Brittany Anne Severance
For as long as she can remember, Brittany has absolutely adored children. Today, at 20, she dreams of going to college soon to become a preschool teacher or a nanny. In the meantime, she plans to keep doing what she likes best – shopping, boating, playing sports, and hanging out with her closest girlfriends, Meggan and Melody, and boyfriend, Gabe.
In March 2003, Brittany (or “Britter” as she’s sometimes called) discovered she had Ewings Sarcoma, a rare form of cancer that starts in the bone or soft tissue. As anyone can imagine, being forced to stay home everyday and miss her senior year of high school was extremely difficult for Brittany. That was in addition to the chemotherapy and constant medical attention she had to undergo. Even still, Brittany continues to look at the bright side of things – and never loses sight of the valuable life lessons she’s learned and the great people she’s met on her journey over the past year.
When asked what advice she has for those faced with overwhelming challenges, Brittany responds, “Never give up hope, faith and the good fight because the best things are worth fighting for…always.”
Christian James Siel
Meet Christian, a delightful eight-year-old with a heart so brave he reminds family and friends of the courageous lion in the Wizard of Oz. By the time Christian was two months old, he had already undergone surgery to repair a hole in his heart. When he turned three, he was hospitalized for an aortic valve replacement, followed two months later by a repeat of the same procedure. After suffering heart failure last year, Christian underwent a heart transplant that resulted in a four-and-half-month hospital stay.
These challenges can’t keep him down. Even though he tires easily and often, Christian maintains an iron-clad will that astonishes everyone who’s had the pleasure of knowing him. He understands and accepts his heart problems with a wonderfully upbeat attitude, says his mother. “He pushes himself to get better whenever he’s ill – and communicates with his nurses, doctors and family in a loving way.”
Ever since his heart transplant in St. Louis, Missouri, Christian has been a huge fan of the St. Louis Cardinals. He’s also a big fan of cheeseburgers and video games – and simply adores his Cat, Jax, and his Basset hound, Rufus. At school, Christian has lots of friends and looks forward to P.E. and music class.
Christian’s kind, compassionate and brave spirit – along with his constant, genuine concern for others – exemplify the qualities of a hero.
Lorin M. Smith
If left to his own devices, eight-year-old Lorin could find any number of fun-filled things to keep himself busy every day. Most often, he enjoys going to the movies, chowing down on pepperoni pizza, reading, riding his bike – and better yet, shopping with his grandmother. What’s more, he likes country & western music – and isn’t opposed to kicking up his heels when the mood strikes him.
Last year, Lorin suffered a severe burn injury. To date, he’s not only had to endure the long and intensely painful process of healing from burns covering 20% of his body, but he’s also had to undergo a series of reconstructive surgeries to correct scarring.
Through all this tragedy, Lorin has demonstrated more courage than his family thought possible for one human being. “He has shown so much bravery in the midst of such physical and emotional trauma,” says his grandmother. “His level of acceptance is astounding. Even after all he’s been through, he’s still more concerned about caring for his family than about anything else.”
Lorin believes a hero is someone who can be strong. His family knows Lorin is just that someone.
David Untz
David (a.k.a. “Davie”) may only be three, but he can talk about almost anything. Wise beyond his years, Davie is an articulate boy with a great imagination and an optimistic outlook on the world. His pet underwater snail, aptly named “Underwatery,” likes to eat fresh basil for dinner. David shares his pet’s fondness for eating green things – and, unlike most kids his age, never has to be asked twice to finish his broccoli. He loves trains, planes and automobiles. Known for his kindness to all living creatures, he even puts candy outside for the ants.
Although he was hospitalized for the better part of last year after being diagnosed with high-risk Acute Lymphoblastic Leukemia (ALL), or cancer of the blood and bone marrow, Davie’s amazing sense of humor never once failed him. His ability to convey his feelings like an adult profoundly touches everyone around him – as does his love for his mother, whom he calls his best friend.
Davie refuses to let his challenging condition keep him from reaching out to new friends and getting a “kick out of life” whenever he can.
Nickeya Warren
It doesn’t take much to coax Nickeya, 4, into belting out her favorite tunes – for instance, “One-Two Buckle My Shoe,” or “Wheels on the Bus go Round and Round.” In fact, Nickeya (“Keya” for short) would be happy to sing all day long! Unless of course, she’s in the middle of eating an eclectic selection of her favorite foods, including pickles, pizza, salads and candy. An energetic, curious little girl, Nickeya enjoys playing in the park with her younger brother, riding her bike and attending playschool.
On March 12, 2003, Nickeya’s parents learned that their daughter suffered from a Pilocytic Astrocytoma brain tumor. During a year’s course of treatment, Nickeya has experienced numerous pokes, prods, weekly chemotherapy treatments, brain surgery and much pain. Nonetheless, she confronts these challenges with poise and a bright outlook that amazes her family. “Nickeya’s gone through so much, and yet she does everything she needs to do with a smile. We are so very proud of her,” says her mother, Nicole. Those who know little Nickeya are touched by her compassionate, brave heart and willingness to help others.
Claire Maki Wilson
True to her nickname, 2-year-old “Claire Bear” likes nothing better than to cuddle. She possesses a special fondness for music, too. According to her family, Claire is quick to get a groove on and start dancing – no matter what the song. Then there’s her fascination with ducks: rubber ducks, fluffy ducks… All kinds of ducks capture her attention. Oftentimes, when Claire is just walking along, she can be heard uttering, “Duck, duck, duck,” laughs her mother, Karen.
Claire was born on November 8, 2002. A day later, her doctors detected two major birth defects – one affecting her heart and the other affecting her esophagus and trachea. When she was just five days old, Claire underwent open heart surgery – and was released from the hospital within three weeks. This past December, doctors detected another serious problem, a very aggressive cancerous tumor in the center of her brain. Since then, Claire has had four brain surgeries, on top of intensive chemotherapy.
Whenever Claire visits the hospital, the faces of hospital staff light up because Claire never lets anything stop her from smiling and laughing. Even though she’s so young, she has already taught her family a lot about life. “She has shown us that it is important to live each day and enjoy, regardless of what’s happening,” says her mother. “Claire is an absolute miracle. She keeps finding a way to beat the odds.”
