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2009 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 2009 Hero Kids were unveiled September 13th, 2008 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon.
Here are our 2009 Hero Kids:
Jayden Alvin-Anderson
“J-Mike” is a sweet 4-year-old boy who adores his best friends, his loving family, and playing with trucks in the dirt. Jayden also enjoys taking trips to the dump with his papa, listening to hip-hop music, and watching the Trail Blazers and Seahawks. His family knows how special he is and that anyone who meets Jayden will feel his unique spirit.
Diagnosed with brain cancer in January 2009, Jayden has dealt with challenging medical treatments including blood and platelet transfusions after a skull injury. Despite not being able to go to school or play in the dirt as much as he’d like, he enjoys learning more about himself and his illness.
Jayden’s bravery in the face of these medical obstacles has been an inspiration to his family. Says his mother Chante, “Seeing Jayden be strong through this has caused me to be a stronger person.” By facing his illness with strength and a smile, he shows the world what a true hero can be. In his own words, “A hero can be super or be regular people like me and papa.”
Amos Anzures-Linare
Three-year-old Amos is a smart kid with a smile and spirit that everyone loves. He likes playing with friends, toys, water, and the computer. Listening to Latino music and dancing are also favorite pastimes, and helping his mom with the cooking is fun, too. His choice for dinner would be Mexican food or Vietnamese noodles.
In January of 2008, Amos was diagnosed with acute lymphoblastic leukemia and since that time has faced radiation, chemotherapy, and even a bone marrow transplant. His mom says the most difficult times are when Amos lacks energy, appetite and is in a lot of pain. At first it was a struggle for Amos to communicate to his parents how he was feeling, but now he’s better able to express his needs or tell them what is wrong.
Amos is a hero because he is strong, brave, and keeps his spirits high despite the difficult procedures he’s had to experience. His mom Maria’s advice to others dealing with illness is that kids should always talk to their parents about how they are feeling, letting them know when there is pain or problems and not being afraid of medical procedures. “Even though Amos is very young, he knows that he has been very sick and has a spirit that helps him accept his treatment to get better.”
Nadia Ellsworth
Sweet Nadia is an affectionate teenager who adores her family and flavored chapstick. She likes all kinds of music, but especially enjoys listening to her sister sing. She’s involved with Girl Scouts and loves spending time with her friends. Though she requires 24-hour care, she is an angel and a gift to her family and they know life would not be complete without her in their lives.
When she was one year old, it was determined that Nadia had severe cerebral palsy with hydrocephalis. Now 13, Nadia has been through surgery on her hips, spine and brain, and has had more doctor appointments than most adults. Though this has presented her life and her family with numerous challenges, her parents are happy that she is able to bless the lives of those who care for her. Nadia is happiest when she’s with other people, talked to, held and involved.
Nadia’s mom and dad advise others to be patient with people when they don’t understand the difficulties of various medical conditions. They try and stay optimistic and encourage others to never give up. They say a hero is someone who has “persistence in the face of adversity and keeps a positive attitude in spite of difficulties.”
Cole Flack
If you’ve got ribs on the barbeque and a plate of watermelon, you can be sure that Cole will be there and ready to eat. An avid sports enthusiast, this 14-year-old’s favorites are wrestling, baseball, football (especially the Oregon State Beavers), fishing, and hunting. He also likes to read, listen to music, and cuddle his kitten named Nike. This teenager has a positive attitude and outlook on life.
His strong faith has helped Cole through the hard times since his diagnosis with dermatomyositis in February of 2007. Since then, Cole has had multiple abdominal surgeries, chemotherapy, and steroid treatments. He has a hard time not being as active as he used to be, and craves outdoor activities, sports and close family time.
According to Cole’s mom Kami, he never gives up and refuses to feel sorry for himself, choosing to look at the bright side of things because that makes everything easier. Cole says that a hero is “someone people look up to and respect. A hero has a good attitude, even in the most difficult times.”
Jendra Gamel
Seven-year-old Jendra is a lovable girl who likes Mexican food, collecting everything horses, coloring with crayons, swimming, and watching movies. She’s very good at reading, and her favorite school subjects are math and technology. Although she uses a walker to get around, Jendra enjoys time with her friends and family and lets her positive attitude shine through.
At approximately two years old, Jendra’s parents noticed clumsiness, loss of strength and fine motor control. Since that time, Jendra’s doctors have been searching for a diagnosis. She has had a back surgery, six MRIs, spinal taps, biopsies and more, but there is still no definition to her illness. Jendra needs round-the-clock care and has trouble doing many everyday things on her own, but continues to do her best. The family says they have received understanding, support and involvement from many people, including Jendra’s school district.
Mom and Dad do their best to explain approaching tests and procedures so that Jendra knows what to expect from doctor visits and hospital stays. They say that their little girl is a hero for knowing when she has the ability to do things for herself, but also understanding and accepting her limitations. “Jendra’s positive attitude and her smiley disposition cause others to go out of their way to help her.”
Amber Gentry
A dancer, singer, and choreographer, Amber is a girl with a sweet tooth who loves sweet foods and cooking desserts. She loves music, mostly classic rock, and thinks school is hard, but also very fun. At seventeen, she has faced some of the toughest challenges a person can face and has come through with an incredibly positive attitude and outlook on life.
In January, 2008, Amber and her family found out she has Ewing’s Sarcoma, which led her into 14 rounds of chemotherapy, 10 rounds of radiation, a15-hour surgery, and three months in a body cast. When she almost lost a leg due to her illness, she told the doctors, “I think not!” One thing Amber knows now is that she will never take the ability to walk for granted like other people often do. She misses walking and can’t wait to dance again.
Though dealing with her illness has been difficult, she has enjoyed her newfound friends. Her spirit shines to those around her, encouraging her fellow patients through their illnesses. To Amber, a hero is someone who has done amazing things; someone you can look up to. And to her mom, Linda, Amber is just that. “She is the strongest girl on the planet.”
Avarie Giles
Avarie is a little girl with a strong personality who is always on the move. Whether she’s swinging (if she had her way, she’d be on the swing all day), dancing, or re-learning to ride her bike, Avarie is always going, doing, and playing. She loves her Barbie and Polly Pocket dolls, strawberries, baby carrots, cherry icees, and all music – especially the cello. To Avarie, a hero is someone who faces and overcomes a challenge; someone who never gives up.
Just about a year ago, Avarie was diagnosed with high-risk acute lymphoblastic leukemia. For an active four-year-old, the loss of use of her legs and fatigue have been difficult challenges. Avarie has been through severe infections, colitis, septic shock, a bone marrow transplant, and an E. Coli infection at the site of the transplant. This fight has been tough, but she is looking forward to the recovery of her legs and not spending so much time in the hospital.
Despite the struggle, the Giles family has enjoyed the closeness this experience has given them. The time they spend together is truly valuable and enjoyed by all. They feel that their daughter is a hero because she has touched so many lives and brought smiles to so many faces. They say, “No one was ever going to make her do what she didn’t want to. It has taken tremendous strength for her to overcome that and allow others to save her when she wasn’t able to save herself.”
Karime Gutierrez
She may only be two, but this little cutie loves to rock, especially to “Nothing Else Matters” by her favorite band Metallica. Karime loves to dance and sing, draw, play baseball and basketball. Her favorite foods are chicken tacos, quesadillas, pizza and Kix cereal. Karime’s dad Juan says that she’s a hero because she has gone to war with her condition and at the end of the day, her smile prevails.
In 2007, at only 11 months old, Karime received her diagnosis of rhabdomyosarcoma. Her family quickly realized their baby had cancer and all they could do was try their best to help and pray for her. It is simple moments like seeing her run and play and hearing “I love you mommy and daddy” that mean the most to her family. Life has been challenging for Karime and her family, but they’ve only grown stronger in the wake of difficulties from Karime’s illness.
The Gutierrez family is grateful to the doctors for finding the best possible treatments for Karime. She has been given the chance to fight and pull through, to live and never give up. To others dealing with illness, Juan says that patience and lots of love will always beat the worst of days. “One word can sum up what makes my child special: Life,” says Juan.
Cedehlia Jeffers
Six-year-old Cedehlia is an animal lover, swimmer, and happy camper. Some of her favorite times are spent with her cousin Sarah playing outside or eating pasta & fruit. Don’t be surprised if in the future you see this little cutie on Broadway – when she grows up Cedehlia aspires to be a model, actor & singer. One of her favorite things to do is make up new songs because she loves rhyming and country music. Despite her complex medical history, she has a silly and strong-willed personality with a passionate outlook on life. She has grown stronger and more fearless in the face of her challenges.
Cedehlia has had nine major surgeries due to complications on her spine and intestinal area. She has a hard time letting others know she is in pain or having difficulties. She’s seen her share of doctors and dealt with procedures that have been tough to handle, but somehow Cedehlia has continued to be strong and courageous.
Cedehlia’s view of a hero is someone who is special and strong, helping other to be safe. Her advice to others facing difficult medical challenges is simple: “You’ve got to be brave;” and Cedehlia definitely is. Says mom Teresa, “She is the type of person you just have to meet for yourself.”
Cole Johanson
Fun-loving, kind, and respectful to those around him, Cole sets an excellent example to his friends and family by enjoying his life to the fullest. When he’s not watching American Idol, hanging out with his best friends, or watching the Oregon Ducks play football, he’s reading, writing and learning new things.
After only one day into a family vacation to Salt Lake City during the summer of 2008, Cole learned that he had Burkitt’s Lymphoma. The two weeks that followed included surgeries, chest tubes, kidney failure and dialysis - not exactly the ideal vacation. Upon returning home to Portland, Cole had more chemotherapy, bringing difficult challenges like hair loss, hospital stays, and pain. However, Cole feels that he has experienced so many painful things that nothing really hurts that bad anymore and feels that he has proven to others that they really can get through anything.
Throughout his journey with cancer, his concern was not so much for himself, but for his family and how they were dealing with his illness. His optimism is infectious, and he tells his parents often that they will get rewarded for taking such good care of him. He hopes that other kids with lymphoma will not worry about what other people say about their condition. “Fight as hard as you can and keep a positive attitude.”
Aamir Khandwalla
At age 15, Aamir loves seafood, swimming, computers, and traveling. His favorite subjects in school are biology and math. Being a teenager is a challenge of its own, but it is particularly difficult when you are the height of an average five-year-old. That’s what Aamir is faced with every day, having a connective tissue disorder called Ehlers-Danlos Syndrome.
Diagnosed in 2000, Aamir and his family are thankful that Shriners Hospital accepted him for treatment, and Aamir is grateful to be able to go to school. To him, a hero is someone who is not just strong in their body but also strong in their heart, and he just wants to give hope to others facing EDS.
His parents feel that this condition has been an opportunity for them to truly understand and care for their children in a new way. Though the most difficult thing has been recovery from surgery, Aamir and his family are strong and keep a positive outlook, which they feel is the most important thing when facing the challenges in life.
Malakai Mack
Malakai is a fan of pizza, pasta, cookies and ice cream, and he loves to watch baseball and basketball. He also enjoys music; he loves to dance to anything with a fast beat. This three-year-old has been through more in his young life than many adults in a lifetime, but he faces his challenges with his family close by and a smile on his face.
In September of 2008, Malakai and his family found out that he has stage-four neuroblastoma. He is a bit too young to truly understand his condition and what it means, but has adapted to the situation as if it was the most natural thing. Malakai has faced chemotherapy, surgery, radiotherapy, medication and hospital stays with strength and determination. No complaints – he does what must be done and at the same time makes those around him feel needed, wanted and loved.
Malakai and his family have hope for the future despite the uncertainty, but know that facing this adversity has only made them all stronger and shown them that the power of love can get them through anything. “We can all get through it if we do it together. He has changed us for the better in more ways than can be explained.”
Liam McNassar
Wise beyond his years, four-and-a-half-year-old Liam had an advanced vocabulary, a love for the outdoors, and an endless imagination. His favorite times were playing with his little sister, or leading friends on ‘bug hunts’ and ‘dragon hunts.’ This little boy most often chose books and learning to read and write over playing with toys, but nothing could stop him from ‘dragon slaying’ in the living room, protected by a wooden sword and shield made by dad.
In May of 2008, Liam was diagnosed with hyperdiploid acute lymphoblastic leukemia. At first, he referred to it not as leukemia but his ‘lasagna.’ Despite months of chemotherapy that made his tummy sick, radiation treatments, and a bone marrow transplant, Liam always remained positive and hopeful, smiling and endearing, never losing his joy and enthusiasm for life.
It only took one meeting with Liam for him to claim you as a friend, and he loved everyone. He brought people, families, and communities closer together, and because of him there are over 1,000 newly registered bone marrow donors. Liam’s mom says, “He lived more deeply than others who live decades. He has become our role model and our super hero!”
Cooper Miller
Like many six-year-olds, Cooper likes playing sports and video games, watching football and Nascar, listening to rock and hip-hop music, learning art and music in school, and spending time with his friends. But sometimes it’s hard to be a regular kid when you have to face medical treatments like chemo, radiation, and bone marrow transplants.
In July of 2009, Cooper was diagnosed with juvenile myelomonocytic leukemia and now can’t do some of the things that he used to, like swimming and going to school. Missing out on the things he enjoys has been easier for Cooper to deal with due to the support he’s received from so many people that he didn’t even know before he became ill. He would tell other kids dealing with similar challenges to be strong and hang in there.
To Cooper, a hero is someone you can look up to who is strong and does not give up in the face of adversity. His dad, Chester, says Cooper is a hero for facing his diagnosis and treatment with few complaints, a fighting spirit, and an upbeat attitude. “He has never complained about his diagnosis and just goes along with it. He worries about others more than himself.”
Sherod Nichols
Sherod is a dinosaur enthusiast. He also enjoys football, pizza, yearbook class and all his friends at school. He greets every day with a smile, thankful for more time to spend with the people he loves. Sherod has a giving spirit, and for his 16th birthday he asked that his family donate toys to the CCA rather than buy him presents.
At four months old, Sherod was diagnosed with neuro-fibromastosis type 1 and in August of 2008, he was diagnosed with malignant peripheral nerve sheath tumors. Since then he has had 15 surgeries, months of chemotherapy, and several radiation treatments. Despite his life-challenging condition, Sherod is thankful that his family and community have grown closer through this experience.
Sherod says he is going to enjoy every day to its fullest, and continue to fight until a cure for his cancer is found. With less concern for himself than the friends and family that surround him, Sherod is a positive influence, giving love and hope to the people in his life. Says his mom Karinsa, “He makes us all want to be a better person.”
Derek Quintero-Cruz
Music, Veggie Tales cartoons, toys that make noise and being held by his mom are the things that Derek loves the most in life. At 21 months old, Derek is a little miracle to his family, and continues to teach them lessons about life every day. He is a blessing to everyone with his strength and courage in the face of his heart condition.
When he was only one week old, doctors discovered that Derek had a heart condition called double outlet right ventricle, a form of congenital heart disease. He is still just a toddler, but has already been through three heart surgeries, extracorporeal membrane oxygenation, dialysis, a G-tube, and a tracheotomy. He has even suffered a stroke, and faces ongoing surgeries as he grows. Derek’s condition is challenging because he can be mysteriously fine one day and then the next will be difficult.
Despite all of these things that have come along, his family has faced the difficulties with a “never give up” attitude, and remain positive in their faith. “He’s a little miracle,” his mom Raquel says, “Derek teaches me and those around him about hope and courage.”
Brianna Roach
Brianna is 16-year-old with a sense of humor. When she lost her hair due to chemotherapy, she used it as an opportunity to perfect her “Dr. Evil” impression. Like many teenagers, Brianna enjoys listening to pop-rock music on her MP3 player, and she is always learning new things, especially enjoying biology and art classes.
In 2007, Brianna was diagnosed with medullablastoma. She has faced many challenges in the wake of diagnosis, such as feeding tubes, the use of a walker, slowed responses and hair-loss. While Brianna doesn’t mind her slow responses and difficulty finding the right words at home, in the real world it’s a struggle. However, difficulties were met with the help of family and friends. She is good at keeping her family’s spirits high. Even when she gets a little down, her jokes come out and leave everyone laughing.
Her definition of a hero is someone who can be brave in tough and scary situations. A shy girl who has a hard time asking for help but is always willing to help others, Brianna says cancer has shown her that asking for help is ok. When giving advice to others who face this illness, Brianna says, “Don’t worry. Do your best - it’s all you can do.”
Ashley Roth
Ashley is a beautiful young woman who lights up any room she’s in. Like many 18-year-old girls, she enjoys being social and spending time with friends, watching scary movies and attending concerts. She likes traveling, eating sushi, camping, and listening to all kinds of music. Her favorite school subjects are the sciences, particularly biology, anatomy, physiology, and English.
Ashley has been fighting nodular sclerosing Hodgkin’s Lymphoma since her diagnosis in July of 2007. She’s dealt with a range of treatments, from chemotherapy and radiation therapy to several difficult surgeries, including a bone marrow transplant, an oophorectomy, and a tonsillectomy.
Despite the difficulty Ashley has in telling people that she has cancer, she is thankful for the privilege she has had to meet so many strong and amazing children and young adults. Ashley has gained an appreciation for life that pushes her to show others that they are beautiful and strong in their own ways. She hopes that other kids fighting disease will keep a positive outlook and reach out to others when needed. “Always know that no matter how rough it gets, this too shall pass!” Her strength and resolve inspire those around her. Ashley’s friend Janet says, “Her spirit shines through her eyes and is contagious – she illuminates our lives.”
Maria Ruiz
Maria has an eclectic palate. Whether it’s Lucky Charms, carne asada, crepes, or pork-fried rice, you can bet this 9-year-old will eat it. Maria loves spending time with her friends, pop music, and school subjects like math and science. She has an incredible affection for her family, especially her sisters who she makes sure to include in everything she does.
Maria received her diagnosis of aplastic anemia in 2003, and has since faced immune suppression therapies, two bone marrow transplants, over 20 surgeries, and even a 235-day hospital stay. Through every difficulty, her mom says Maria has been incredibly brave. While Maria wishes to be able to walk, run and play with her sisters like she used to, she also sees a silver lining in her diagnosis, “I want to get better but I’m braver than I was.”
To Maria, a hero is someone who can help people or save them. Maria’s mother, Christina, is humbled by her daughter’s grace, courage and determination; “I could be angry or upset and she will tell me “It’s okay Mom, I can do it.”
Anthony Signorelli
A fan of basketball, baseball, and pizza, Tony sounds a lot like your average nine-year-old. He likes rock and roll music, dogs and cats, and all of the moments when he just gets to be a regular kid. Always laughing and smiling, Tony is positive and grateful for the things he can do, choosing not to dwell on the things he can’t.
At five months old, Tony was diagnosed with Dandy-Walker Syndrome, a congenital brain malformation, and Liddle Syndrome, leading to over 30 brain surgeries, several shunt revisions, infections after surgery, and headaches. All of this has limited the things that Tony can do; contact sports are not allowed and it’s difficult for him to ride a bike or roller skate because of balance issues. But he and his family are grateful for the doctors and nurses who have helped treat him.
Tony’s sweetness, consideration for others, and positive attitude always shine through. He told his mother once that he was glad he was the one that was sick, and not her. “He is my miracle boy, my hero, my world. I can’t wait to see what he can do as an adult.
Matthew Stone
It may be unusual, but Matthew’s favorite breakfast is a corn dog with ketchup and a bowl of cereal. He loves basketball, wearing his orange and black jacket, and cheering “Go Beavs” anytime he sees the Beavers emblem. Matthew’s favorite activities are playing his Playstation 2 motorcycle game with his dad, swimming, riding his bike, and listening to or playing music.
Matthew was born with Down Syndrome, and at five years old was diagnosed with atlantal axial syndrome. This required surgery to fuse his skull and first three vertebrae to help prevent complications from having loose ligaments in his neck. Then in 2005 when he was10, Matthew was diagnosed with acute lymphocytic leukemia. There have been many treatments, hospital stays, and even complications of Down Syndrome, but Matthew’s family is inspired by his ability to live in joy and contentment, rather than sadness and despair.
Bringing a joyful smile to those he encounters, Matthew inspires others despite the difficult circumstances in his life. He is a positive, polite, friendly, fun person, and enjoys being the center of attention. According to his family, Matthew is a hero because “in his innocence people can see that by living one day at a time you can still live life, however altered it may be, through these difficult times.”
Lopaka Swope
Raised in Honolulu, Hawaii, 14-year-old “Paka” loves sushi, spam musubi, and island food in general. Watching the Trail Blazers, playing video games, and hanging out with his friends are some of his favorite things to do. He also loves R & B, Hawaiian, and Reggae music, surfing and boogie boarding.
In March of 2008, Paka was diagnosed with osteosarcoma of the left proximal tibia. He underwent a total knee replacement and had a titanium rod inserted in his leg. When traveling between islands for his chemotherapy treatments became a hardship, Paka moved to Oregon to live with his grandparents, aunt and sisters in order to complete his chemo, which ended this past March. Paka has been courageous when dealing with fatigue, nausea and pain during his treatment, but misses fun stuff like surfing and roller skating.
Paka says that he is happy to be among family members and friends, who encourage him to stay positive and optimistic, focus on one thing at a time, and know that there are always loved ones to help support him in his decisions and actions. He has faced many great difficulties at a young age, and is an inspiration to his family. “Lopaka has become a very strong-willed individual who is unafraid of to take on the next challenge presented to him. He is our HERO.”
Caden Thrasher
One-year-old Caden loves to be outdoors. He is always on the move and just wants to be with his family, look at books, play with his toys and have fun with his sister and their dog, Ruger. Caden is such a happy, loving little boy that everyone who meets or takes care of him instantly adores him.
At just over five months old, Caden was diagnosed with brain cancer. In his young life, he has undergone 26 surgeries, including two intense brain surgeries to remove his tumor. He’s had 8 rounds of chemotherapy, multiple MRIs and CT scans, shots, shunts, and many other medical procedures. While going through all of this, Caden has not been able to just be a child, which has been hard for his parents. However, they continue to be inspired by the wonderful people who have helped and cared for Caden and their family along the way.
Though Caden has spent much of his time in the hospital, he continues to keep a smile on his face and continues to be an encouragement to his family. His parents are constantly amazed by their little boy. “Even at his weakest, Caden shows us to never give up hope, because he always trying and improving.”
Eli Walker
Eli is a kid with a great sense of humor who loves to make other people laugh. He likes bumper cars, video games, playing with his brothers, and eating nachos. Craft time is a favorite as well. For a five-year-old, Eli has a wonderfully positive outlook on life, and doesn’t really see himself as anything other than a regular kid.
Eli has been going through challenging medical treatments due to his diagnosis of acute lymphoblastic leukemia in September of 2007. Years of daily chemo and months of physical therapy for Guillain Barre Syndrome (a complication of chemotherapy) have Eli in a wheelchair, re-learning to walk and run. Though he doesn’t like getting his port accessed or the fact that he can’t play with his brothers like he used to, Eli has enjoyed all of the new friends he’s met due to his illness.
Eli doesn’t let his illness mentally set him apart from others, in fact he believes that everyone had a port when they were four. He inspires his parents with his lack of self-pity and never wonders “Why me?” He also knows that a constructive attitude can take you far. His idea of a hero is someone who simply says, “Yes, I can!”
Shaniqua Warren
Shaniqua is an outgoing girl who loves life and always tries to live it to the fullest. Her beautiful smile and vibrant personality are infectious, and she loves to draw and take photographs. Shaniqua’s favorite activities are trips to the beach and going to the movies. She also enjoys hip-hop and R & B music, seafood, and doing school projects on the computer.
Since she was five, Shaniqua has been dealing with the pain of juvenile rheumatoid arthritis. She has had two surgeries, one on her right knee and one on her left hip, and can foresee more surgeries to come. In facing this condition, Shaniqua has dealt with pain and having to learn to do things in different ways. She enjoys the new people she meets and the special opportunities presented to her. She wants other kids facing illness to just do their best even when it’s really hard. “Even if you think you won’t get better, just keep up the good work.”
Shaniqua’s mom, Andrea, calls her a hero and an angel. “Shaniqua is a very special person - she keeps her head high. It has been very hard for her but she keeps going…she keeps me going.”
