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2010 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 2010 Hero Kids were unveiled September 12th, 2010 at the annual Celebration of Courage Family Festival, held at the World Trade Center in Portland, Oregon. Phenomenal photographer and CCA Ambassador Board member Joni Kabana photographed this year's Community Heroes.
Here are our 2010 Hero Kids:
Jacob Albin
As part of living with cancer, Jacob has suffered bone marrow tests, lumbar punctures and blood clots. In addition, the steroids that he has been on have made him moody, hungry and achy. On the up side, Jacob says the best parts of having cancer have been meeting his Chemo Pal Ryland, making new friends and his Make-A-Wish trip to the Bahamas.
To Jacob, being a hero means “risking your own life to save others, not being selfish, and bringing joy to other kids’ hearts going through the same thing I am.”
Daniel Bair
Daniel is mighty serious about his favorite subjects in school – PE and music. He has outstanding musical ability and before he had a single music lesson, he was able to listen to a song on the radio and pick out the notes on his keyboard. He is now learning to play the piano and loves rock and roll music.
Daniel was diagnosed with extensive low grade astrocytoma in June of 2007, at 5 years old. Since then he has undergone chemotherapy, brain surgery and suffered the loss of his vision. When asked about the difficulties of living with his condition Daniel said, “It’s very difficult walking with a cane and the chemo makes me sick.” However, Daniel has learned to cope in impressive ways. He can recognize which doctor or nurse is walking down the hall by the sound of their footsteps so he always knows who is coming, though he says it’s “harder when they wear quiet shoes.”
You’ll never catch this happy-go-lucky guy complaining. To Daniel, a hero is “brave – even during hard times.” His dad says, “He just brings joy to everyone he meets and faces his problem with a braveness that I could only dream of having.”
John Denham
John is hilarious. He is always cracking jokes and making people laugh. His mom says, “He is one of the funniest people I’ve ever met. We’re always laughing. Anybody who meets John is taken with his personality and wants to be around him.” When he isn’t being a comedian, this 18-year-old is enjoying food of all kinds — his favorites are spaghetti, steak, fudge and tapioca pudding.
At birth, John was diagnosed with dystrophia ressessive epydermolysis bullosa and IGA hephropathy. For the past 18 years, he has endured throat dilations, hand surgery and several blood transfusions. Each time John faces another session of medical treatments there is a moment where John must look inside himself and find the courage to go on. “I don’t know how he does it, but I am very proud of him for it,” said his father.
The hardest things for John are not being able to do the things other boys his age can and living with chronic pain. However, John never loses hope. When asked what a hero is to him, he said, “someone who overcomes and conquers the hardship with a smile on their face.” Perhaps his understanding of the power of joy is why this funny guy is always making people laugh.
Nirvanna Fairbanks
Nineteen-year-old Nirvanna is passionate about linguistics and writing, and not just within the English language—she’s particularly fond of French! This hero’s interests don’t stop there; she’s a skilled pianist, an excellent swimmer and thoroughly enjoys a good book.
When Nirvanna was just 8 months old, she was diagnosed with cerebral palsy and has since undergone five surgeries intended to improve her muscle mobility. Despite the difficulties that accompany living with a disability, like a true hero, Nirvanna has overcome every challenge that life has placed in her way.
Nirvana would encourage others facing her same diagnosis to “maintain a sense of self-worth. Count your strengths and successes, and learn to recognize weaknesses as ‘areas of improvement.’ Educate people so they can see that your disability is only part of who you are.” Nirvanna is a true inspiration to her family with her ability to exude patience, kindness and compassion, which makes the lives of her family members “1,000% better!”
Bryten Figgins
This 7-year-old has more friends than she knows what to do with! In fact, everybody wants to be around Bryten because of her natural ability to make people feel comfortable.
Bryten was diagnosed with osteogenesis imperfecta, which has caused more than 200 broken bones throughout her lifetime. The painful fractures usually occur weekly and sometimes more frequent. Bryten always stays positive and does not let her pain stop her from trying new things. She loves math and has fun diving into complex mathematical equations. When she isn’t having fun with arithmetic, you will find her camping, playing in the sun or swimming with her daddy.
When asked about the most challenging part of living with her condition she said, “not being able to walk or climb and being too short to reach things.” But with Bryten’s fighting spirit, her challenges rarely get her down. To Bryten a hero “saves the day and makes you smile.” She tries to do this every day by sharing her positive spirit and smiles with everyone she meets.
Spencer Hardy
Spencer received a three to six month terminal prognosis in May of 2009 caused by tumors from Ewing’s sarcoma. At age 13, cancer was covering his brain and there were two large tumors on his back. Doctors told him that he would lose the use of his body, his organs would shut down and then he would die. At that point, he was already struggling to walk. Spencer decided he needed a miracle.
One morning his mother walked into his room and smiled when she saw three sticky notes above his bed that read, “I” – “WILL” – “LIVE.” Each morning when he woke up, and every night before he went to bed, they were an important reminder for him. Five months later all his tumors were completely gone.
Now Spencer is making up for lost time-- running, riding his bike and eating as much pizza as he can! His definition of a hero is “someone who never gives up no matter how hard the challenge is.” A normal kid who loves to play with his legos and computer games, Spencer shows us that we all have the ability to be heroes. Spencer’s advice to others going through a challenge? “Smile all the time. It will be tough, but you’ll meet a lot of great people along the way.”
Josanna Harmon
Ten-year-old Josanna loves her family and is a real “snuggle bunny.” She also loves to ride her tricycle, look at books and play with her toys. Josanna was diagnosed with schizencephaly at birth, causing seizures, delays in speech, vision, balance and coordination. The toughest thing about her condition is that she is not able to easily communicate and needs help from others.
The saying “It takes a village to raise a child” hits very close to home for Josanna’s family. Her mom says, “Josanna has such an amazing team supporting her. We are so grateful to all of her doctors, therapists and everyone at her school for all they have done for Josanna and the support they have given our family.”
Even though everyday skills can be very challenging for Josanna, she remains a sweet and gentle girl. Josanna is willing to try just about anything, from yoga to hippotherapy (physical therapy on a horse), which she ended up loving! When asked what she would say to other kids facing the same condition, her answer would most likely be, “Accept yourself. Do the best you can. It’s ok to be different and ok to do things in different ways. Be patient with yourself and others.”
Sakia “Ki Ki” Ann Harris
If Ki Ki could stage her perfect day, she would be dressed up like a princess, dancing to R&B while doing arts & crafts with her friends, family and her dog Jackson. If Sponge Bob was playing in the background, all the better! This four-year-old knows all about the importance of positive thinking. Just try to find her without a smile on her face…bet you can’t. In March 2009, Ki Ki was diagnosed with toxic shock, pneumonia and group A strep, resulting in rounds of ECMO, dialysis and amputation of her lower extremities. The biggest challenge for Ki Ki has been her loss of mobility, but her mom says “with the help of her physical therapy team, it won’t be for long!” Ki Ki’s mom says she is special because she never feels sorry for herself and she is always smiling. When asked what advice she would give to another child diagnosed with the same condition Ki Ki said, “Keep the faith and fight. With family on your side, everything will come together.”
Fabian Hernandez Ponce
Fabian’s smile is full of joy and life. He has been through some difficult times with his disease, but he feels that a hero is “strong, never gives up, always does their best and never backs down.” He brings this mentality into everything he does and has handled his treatment with grace and strength, even when he was going through very difficult rounds of chemotherapy and a critical operation that the doctors weren’t sure he would survive.
In May 2007, Fabian was diagnosed with acute lymphoblastic leukemia and has been fighting this invisible monster ever since. Now that this tough 11-year-old is feeling better, he is making up for lost time by doing all his favorite things. He loves to play basketball and go to the library, but more than anything…he loves to eat! Chinese food, pizza and chicken are his favorites, but he loves it all.
When asked what advice he has for other children dealing with the same condition, he said, “I would tell them that I fought hard to survive and now I am doing great! They can make it! I would tell them not to listen when other kids make fun of them for being bald – they don’t know what you are going through. I would also tell them to get a Chemo Pal because then you always have a friend and someone who always keeps coming back.”
Myles “Smiles” Ibarra
His nickname says it all – Smiles is a happy-go-lucky 1-year-old who loves everyone. Need proof? Check out his award winning smile. This little guy knows the secret to living a happy life! He likes to listen to music of any kind and has quite the distinguished pallet. Basically, if it’s food, he likes it.
When he was 4 months old, Myles’ family found out that he had acute myeloid leukemia. During his treatment, Myles suffered from a staph infection and had to endure bone marrow biopsies, multiple spinal taps, blood transfusions and several surgeries. In the end, Myles had to spend more than seven months in the hospital, which is the majority of his life. The toughest part was not being able to see his mom, dad, sister, grandma and grandpa regularly. He really missed them.
Myles’ mom says her little angel is definitely a hero. To her, a hero is “someone who can overcome the unexpected and laugh and smile all the time.” She is so proud of Myles, who grows stronger everyday despite everything he has been through. He laughs all the time, even when he is feeling sick because he is a truly happy guy. His mom says, “He has shown our family how to be strong and come together as one. He understands the importance of living each day to the fullest – always with a huge smile on your face.”
Cynthia Johnson
This 14-year-old devoted Girl Scout loves ice cream, Hello Kitty, field trips to the zoo, posing for the camera and, believe it or not, dogs that bark really loud! Spending time with her best friend Jasmine and listening to classical music are key to making this teen happy.
After a prolonged hospital stay at just 3-weeks-old, Cynthia was diagnosed with meningoencephalitis, which is an infection and inflammation of the brain. Because she was a fighter from day one, Cynthia successfully made it through frightening seizures and a 50 percent survival prognosis. This young lady has survived multiple surgeries and countless complications, yet her disease prevents her from walking, eating and many other motor functions.
Cynthia’s family is so grateful for their little hero. Her mother shared, “Each time Cynthia has been faced with a life and death battle, when the odds were not with her, she still persevered with a strong will and a smile for all those around her.” .
Danny Keagbine
Battling Ewing’s sarcoma at age 20 isn’t ideal, but this young man has learned to make the most out of a difficult situation. He stays active with frisbee golf and ventures out to Portland Trail Blazer games every chance he gets. His friends keep him going, and whenever he needs an extra boost he turns the music up loud—preferably rock, rap or reggae!
Danny’s parents and six siblings have been instrumental in getting him through the last 14 rounds of chemotherapy, two spine radiations and 31 pelvis radiation treatments. Even with all the support, it’s been difficult to endure the limited mobility of his pelvis and hips and the constant nausea due to the chemo. Despite the challenges of facing cancer, this hero charges on in life and faces every obstacle with confidence, making him stronger every day.
Danny would tell other young adults in the same battle to never have a doubt and live their life and all its’ challenges with confidence. To Danny, a hero is “someone who you look up to, who has good confidence in what they do and inspires you.” Perhaps what Danny doesn’t know is that HE is just that.
Hayley Kramer
Five--year-old Hayley loves to play dress up with her little sister Samantha. Their dresses must be pink or purple and they pretend they are princesses ruling over their kingdoms, while listening to Disney radio. Sometimes her pets, “Oreo” and “Hershey,” in honor of her favorite snacks, get to be a part of the fun too!
When Hayley was two, she was diagnosed with a brain tumor. After enduring 50 difficult weeks of chemotherapy, she lost her hair and the ability to walk, suffered from short term memory loss and heart problems. Even though that was a lot for a little girl to take, she never lost her love for life and continues to find happiness in the little things. Hayley appreciates the wonderful care she received from the nurses and doctors at the hospital, her family, and life itself.
To Hayley and her family, being a hero means “you’re special, one of a kind, with great family, friends and supporters. You get through tough times.” Her mom is her biggest fan and says, “She is my hero and I’m glad to share her with everyone too! ”
Shelby Min Tran Lee
Most 11-year-old girls aren’t diagnosed with single ventricle congenital heart disease when they are seven. But, then again, Shelby’s not your average 11 year old. She has incredible strength and determination which have gotten her through multiple surgeries, three of which were open heart procedures.
After her diagnosis, Shelby found it hard to run, play and ride bikes. She had to pay attention to what she was eating and remember to drink lots of water. However, Shelby can still do a lot of fun stuff too. She loves to play the piano and is a wonderful artist, who finds joy in sketching the things and people she sees around her every day.
Despite the difficulties of battling this disease, Shelby is grateful that it brought her closer to her family and opened up exciting opportunities for her like designing a Valentine’s card for Doernbecher Children’s Hospital and helping to create a shoe with Nike.
Shelby says that being a hero means “people look up to you and think you’re really cool!” Her advice to others diagnosed with the same disease? Shelby says, “Tell the doctors the truth about how you feel so they can give you what you need.”
John Lehman
John is a 14-year-old, who loves steak, coin collecting, animals and his favorite football team, The Giants. He has three brothers, one sister and some really great friends. John was diagnosed with acute myeloid leukemia in 2009, and since then has undergone a bone marrow transplant that left him battling graft-versus-host disease.
It’s been really tough for John to be so far away from his family, friends and pets while living in the hospital, but he’s grateful to have met people there who were able to change his life. John’s ability to face this illness with courage, persistence and compassion for others is what makes this teen a hero.
John would encourage other kids fighting the same illness by telling them “Don’t give up hope, it does eventually get better.” John is busy getting better every day and finds the strength to smile and go on. His fighting spirit is what has kept him going, even when the going got tough.
Abram Levell
Three-year-old Abram is a sweet boy who likes to do anything if he gets to do it outside. He loves to wrestle with his dad and brothers, who are his very best friends. He can’t get enough music and dances constantly. Can you guess what this outdoor enthusiast’s favorite foods are? Veggies!
In July 2009, Abram was diagnosed with meningococcemia, which has caused both of his legs and several digits on his right hand to be amputated. In addition, he has had to have several skin grafting surgeries and intense physical therapy. Abram has overcome many obstacles in his short little life, but is now walking with the use of prosthetics, scooting everywhere and even climbing stairs!
Abram touches the hearts of each person he meets. He is extremely courageous and determined. His mom says, “I have never met a stronger or more resilient little boy. I feel so blessed to be able to be a part of his life.”
Angelina Lucero-Lay
Just like her favorite food – salmon with Tabasco sauce – Angelina is a spicy six-year old! She is a true performer, who loves entertaining her big family every chance she gets. As she skillfully sings the latest Justin Bieber song, while dancing around tapping her toes to the beat, it is clear that she is made for the stage.
Angelina was diagnosed with acute lymphoblastic leukemia in November 2008. Since then, she has endured long stays and very painful procedures at the hospital, away from her brothers and sisters. Her least favorite are the “back pokes,” the MRI’s and the leg shots (ouch!) that she had to get on a regular basis. None of that is fun, but the hardest part was being away from her family.
Angelina feels that everyone fighting cancer is a hero. For her, the most rewarding thing about living with leukemia is her Chemo Pal Jane. “We spend time together at the hospital and when I’m not at the hospital, we text each other all the time. I love her very, very much!” Angelina is a wise little girl, who regularly gives her mom and dad advice, telling them to “Stay strong.” She puts her arms around her mom’s neck and tells her, “I’m going to be alright.”
Jaya Joel “J.J.” Mattes
Jaya, J.J., just turned 6 years old and he is taking the world by storm! He’s a huge sports fan and can swim circles around his friends at swim lessons. J.J. loves music and is basically his own one-man-band as the lead guitarist, drummer and keyboard player! If that wasn’t enough, he’s a real class clown, who is always making people laugh—often times by popping wheelies in his wheelchair.
J.J. was born with spina bifida and has already undergone 18 surgeries. He is paralyzed from the waist down and in the next 6-12 months will be having a surgery to amputate his legs at his knees. Although there are more surgeries to come, J.J. has a lot to look forward to. “I get lots of toys when I’m at the hospital. I get to go to basketball games and meet cool people,” he said.
J.J. makes a big impact on those around him every day. His mom says, “He brings people together. Not a day passes that he doesn’t put a smile on my face.” She went on to say, “He has a zest for life and is going to accomplish great things!” J.J. would tell other sick kids to “keep having fun and don’t let it stop you from being a kid!”
Ella Ruiz
Ella is only two years old, but she has wisdom beyond her years. A dancer of extraordinary talent, she loves to head bang, shake her hips and groove with her two little brothers. The only thing that can make dancing better is if she has Cheetos, Doritos or fish sticks to munch on while she boogies.
In April of 2009, Ella was diagnosed with acute myeloid leukemia changing her life forever. Her stubborn streak has certainly helped her face treatment of the disease, braving nine months of chemotherapy, which has spanned nearly half her life. One of the hardest things about treating Ella was that she was too young to talk about her pain or express her needs. She was able to use sign language to communicate as best as she could, but her parents were left to guess most of the time.
Now that Ella is healthy, cancer free and the family is back together, they have time to reflect on how brave Ella truly was. Her family said, “Ella has risen to hero status because of who she is and her desire to bring a smile to those around her. Ella can brighten a room and gives us so much to look forward to. She is OUR hero.”
Machai Runtz
There are no strangers in Machai’s life. He is an incredibly social 5-year-old, who seems to be surrounded by people who love him. His mom says, “He is a sweet little boy who has courage and determination to achieve the goals he’s set for himself.” And this little guy dreams big. Machai hopes someday to take the stage as a drummer and guitar player, and knows he will wow the crowd with his dance moves.
Due to issues in utero, Machai suffered a premature birth, nasolgastric tube feedings and neurosesory deficits, such as difficulty with his balance, crawling, walking and talking. To combat these issues, he has been through intense speech and physical therapy, which have helped him tremendously. Machai does things his own way and because of his hard work and perseverance, he is ready for anything.
When asked what a “hero” means to him, Machai said, “It’s like saving the world, that’s a hero. Like Spiderman.” Spiderman may not have been as strong as the Incredible Hulk or as fast as The Flash. He couldn’t fly like Superman, but instead relied on his inner strength and “spider sense” to bring goodness to the world. This is just like Machai, who works with his unique strengths to help others, making him one powerful little boy. We can’t wait to see all the great stuff he is going to do for the world!
Frida Salinas
Music and English are Frida’s favorite things about school — well, that and all of her friends! After being diagnosed with pancreatic cancer in 2009, Frida’s perspective on life changed. She now knows what’s truly important in life, and never takes anything for granted.
This 15-year-old, who loves Italian food, her three dogs, her cat and her blue-and-gold Macaw, knows that a hero is “someone other people can look up to and someone who is fearless.”
Frida’s never-give-up spirit and positive attitude are truly inspirational. She loves volleyball and always cheers for the UCLA Bruins. In her spare time she’s either twirling around in ballet class, or strumming a song on her guitar. When Frida grows up, she plans to give back by helping kids diagnosed with cancer.
Frida’s advice to other kids with her diagnosis is to live life to the fullest and just take each day as it comes.
Levi Seed
For this 14-year-old prankster, a sense of humor has been his strongest defense against his disease. Can’t you tell by his sly smile that he loves nothing more than joking around and pulling pranks on people? When he was diagnosed with acute lymphoblastic leukemia in September 2008, it didn’t stop his playful antics, it only slowed him down a little. In fact, Levi spent a lot of his time in the hospital planning and executing pranks on his doctors and nurses!
His playful nature was certainly tested during his time in the ICU, and when he had to get a painful shot every day in his legs for two months. It was tested again when he began having a severe allergic reaction to his chemotherapy treatments, resulting in horrible nausea and even more time spent in the hospital. When asked about this challenging time, Levi said, “I missed seeing my friends and having to be away from home so much. Also, I missed being able to run and jump!”
Even after all of this, Levi still kept his smile! When asked what advice he has for other children diagnosed with cancer, Levi said, “Keep a positive attitude and keep moving forward. Get a cool Chemo Pal and have a good sense of humor and play pranks on the doctors and nurses. Most importantly, live every day as if it were your last!”
Mason Smedley
Eight-year-old Mason loves rocking out to music and playing video games. His favorite people in the world are his brothers and sister because, as he puts it, “They are the best!” Like every dedicated Portland Trail Blazer fan, Mason loves going to games and cheering on his team.
In August 2003, Mason was diagnosed with juvenile dermatomyositis, which marked the beginning of some very tough times. After undergoing abdominal surgery, suffering from pneumonia twice (the second time put him in the hospital for seven months), he faced ongoing infections from calcium causing open sores, ulcerations and cataracts. Even though he has been through a lot, you won’t see this little rock star without a smile on his face
According to Mason, the toughest part about his disease is being confined to a wheelchair and not be able to go to school with all the other kids. What’s Mason’s advice to those facing the same diagnosis? “Be as happy as you can!” Mason remains a true inspiration to those around him by staying positive and looking for the best in everybody. His family says, “Mason has changed us all for the better and we love every bit of time we get with him.”
Lillian “Lilli” Trippe
As a 2-year-old suffering from acute lymphoblastic leukemia, Lilli still loves to dance, sing and play in the garden. Swimming and playing with her dogs, Coleman and Althea, and painting pictures of caterpillars and snakes are her other favorite things to do. When she’s hungry, she’ll likely ask for mac & cheese, couscous, cupcakes or rice pudding.
Lilli underwent a bone marrow transplant in October of 2008, and due to complications related to a surgery in 2010, spent over 30 days in the ICU. She successfully went through her second bone marrow transplant this past July and is now at home and doing well!
Living with leukemia has been hard for Lilli, but she understands that every day is a new opportunity to smile, love and be a family. She tries to appreciate the beauty in every moment and is learning to live with grace and hope.
To Lilli’s family, “A hero is someone who despite all odds, keeps hoping, keeps loving and keeps believing that tomorrow things will be brighter.” Lilli is definitely that!
Chloe Watts
Eleven-year-old Chloe is a brilliant writer who enjoys reading Harry Potter and the Twilight series. She is a huge animal lover, but is particularly fond of dogs. Now that Chloe is approaching her teenage years, she’s interested in clothes and makeup. Her new adorable haircut is her favorite back-to-school accessory.
When Chloe was nine she was diagnosed with a brain tumor that she named Fred. Eighteen months after undergoing surgery to remove the tumor, Chloe and her family were devastated to find out that Fred had returned. She then had to endure another surgery, followed by 4½ months of inpatient recovery and rehab leaving her unable to eat, speak, sing or walk without assistance.
Now that she has returned home, Chloe is learning to chew again and can’t wait for the day she can eat chocolate cake. Chloe would tell other sick kids to, “Make a promise to someone that you will live.” Her mom says, “She keeps on keeping on, believing as we do that a full recovery belongs to her.” Chloe lives her hero status and inspires those around her daily.
