Warrior Wednesday is the Legacy Foundation's way of sharing the stories of people who are living with Cystic Fibrosis. Each week we'll feature someone who is a fighter, a dreamer and living each day to its fullest while focused on the future.
Would you like to share your story? We'll choose one each week - please start by clicking the button below!
September 19, 2018
Drake Staley | Age 8 | Wilkesboro, North Carolina
This week’s warrior is: Determined, Feisty, Resilient
Drake is an 8-year-old boy who, despite his condition, is completely full of life. He never lets CF slow him down and is one of the smartest 8 years I know, if he doesn’t know the answer to something you better believe he will have it figured out by the next day.
He loves baseball and golf and even has a golf tournament every year to raise money for Cystic Fibrosis research, which is called Drives Fore Drake. He is spunky and caring.
He constantly shows CF that he is the boss and won’t let it take control over him.
He prays for a cure for CF every night and knows one day there will be one.
We’re with you on that, Drake!
September 12, 2018
Carrigan LaCaze | Age 2 | LeCompte, Louisiana
This week’s warrior is: Happy, Strong, Feisty
Carrigan is a beautiful, bubbly toddler despite all of the obstacles that she faces on a daily basis.
She begins every day around 5:00 a.m. to complete her morning therapy which includes two breathing treatments and 40 minutes hooked to her vest. She must also take numerous medicines and vitamins daily along with enzymes for meals and snacks. Along with the many treatment routines, going for clinic check-ups, and being admitted to the hospital, she is a normal two-year-old who lives life to the fullest. '
She loves going on trips with her family. Her favorite places are Disney World and the beach. Carrigan is also very active and participates in gymnastics. She may have CF, but CF doesn’t have her!
September 5, 2018
Camden Forte | Age 3 | Midland Park, New Jersey
This week's warrior is: Resilient, Strong, Feisty
My first son Camden is almost 3 years old and was diagnosed in-utero. We didn’t know we were carriers, but it came up in blood work, the doctor suggested an amniocentesis, and we received the diagnosis. Camden spent 10 days in the NICU but came home ready to take on life. He has had his share of roadblocks already like spending his first Christmas on IVs in the hospital, three bronchoscopies last summer, and another round of IVs. You would think that would stop him, but no. He is full of life and energy and takes on his CF tasks each and every day.
My husband is a PGA professional and I’m a high school softball coach, so an active lifestyle is exactly what Camden was born into and he loves it! He loves to play in the sound and go to the beach, he loves to dance and sing. Overall, he’s full of life!
We found out we were pregnant with baby number two just last June. We decided to have another amniocentesis done and baby boy number two, Rory, was diagnosed with CF as well. He spent his first nine days in the NICU but came home to the routine of breathing treatments and enzymes... now we just had two of EVERYTHING!
The past almost four months have been a learning curve of managing everything but it’s the two boys we’re learning from rather than the other way around. Big brother is always looking out little brother. Rory falls asleep during Camden’s vest, (maybe it’s the hum) Camden understands that breathing treatments are part of Rory’s day and they’re growing and amazing us each and every day. The future is bright for those with CF and I’m hopeful for the brotherhood and friendship that these two are creating.
August 29, 2018
Emersyn Quinn | Age 4 mo. | Trimont, Minnesota
This week's warrior is: Strong, Courageous, Silly
After finding out about Emersyn’s diagnosis of CF, we were so terrified about what this new life would look like for not only her, but her big brother, her parents, grandparents, and everyone else involved in her precious life. As of now, she is given a few medical treatments a day and is a champ at them! So far, everything seems to be trending in the right direction for her. We hope to keep her that way as long as possible!
In just her short two months of life so far, she has brought so much joy to everyone she meets. We can’t wait to watch her grow into an amazing, strong, sweet, caring little CF warrior we know she will be!
Katie Von Hagel, Age 17 | Gardendale, Alabama
This week's warrior is: Selfless, Happy, Sweet
Katie is a 17-year-old Senior at Gardendale High School. She has been a cheerleader for the last 6 years and believes exercise is a key to staying healthy with CF.
She’s had numerous sinus surgeries but has only been hospitalized three times for CF related issues. She’s super responsible for taking care of her chest physical therapy, her medications, and breathing treatments.
She NEVER complains about her cheer workouts and always has a super awesome outlook on life.
august 15, 2018
Camden McCormick, Age 2 | Woodbine, Maryland
This week's warrior is: Happy, Determined, Courageous
My little warrior is 2.5 years old and is learning all sorts of things.
He loves to help his mommy out with everyday chores and takes his medications like a champ. He loves being outside playing on the playground and meeting new friends. We get to educate others about CF wherever we go. Traveling to clinic and study visits are hard but truly eye opening to the world of CF.
We don’t let CF define him or who he is.
Help us cheer on Camden!
August 8, 2018
Jimmy Stein, Age 8 | Youngstown, Ohio
This week's warrior is: Happy, Resilient & Driven
My 8-year-old has cystic fibrosis and he is full of life. I think his having cystic fibrosis has helped him become a great person and have a great understanding of life and the value of life.
Jimmy is very determined. For example, when he had to get an emergency appendectomy the doctor told him he could go home if he could stand up and walk down the hall to the window. Sure-enough he did it by the end of the day.
As a mom I worried about holding him back and I have fought my battle with that and have learned to let him be a normal boy who just happens to have cystic fibrosis. Jimmy rarely complains about doing treatment time.
He is a brave young boy with the determination to live a happy, full life. He is active in sports such as soccer and basketball and just loves his younger sister and dog sky.
august 1, 2018
Sebastian Bills, Age 3 | Connersville, Indiana
This week's warrior is: Happy, Strong & Silly
Sebastian is just about to have his 3rd birthday and has faced more in his short 3 years of life than either his father nor I have been through in nearly 30 years.
Sebastian's CF has a strong sinus component. He had his first sinus surgery last year and is already facing another.
Despite his cystic fibrosis related sinus disease, Sebastian is the happiest, silliest, sweetest boy.
When he isn't doing therapy, he loves helping take care of his little sister, Meredith, playing outside, and playing with his cars.
He is a joy. He is hilarious. He is simply the best!
July 25, 2018
Shane Healy, Age 1 | Chesterfield, New Jersey
This week's warrior is: Happy, Strong & Silly
“Best boy in the world!” My husband and I say this about Shane every day, sometimes multiple times a day.
Like all kids with CF, Shane has to endure so much more than most people do on a daily basis. Our older daughters, who do not have CF, frequently tell us that they think Shane is special because they wouldn’t be able to do what he does every day without crying and fighting.
Shane is a normal, active (extremely active) 21-month-old but he is very much aware of his twice daily nebulizer and chest PT sessions. He knows the routine and when he sees the inhaler and nebulizer come out he runs to get his blanket ‘blanky’ and cozies up in his Mickey chair. Our favorite thing in the world that Shane does is the ‘kissing circle’. When myself, my husband and two daughters are in the same room together (which is a rarity with our busy schedules) Shane recognizes this and he pulls us all together in a circle and goes around and give us all kisses.
He is pure joy to be around and we know he will do big things in the future!
July 18, 2018
Steeley Jo Branscum, Age 3 | Muleshoe, Texas
This week's warrior is: Strong, Courageous & Fiesty
Steeley Jo is 3 years old and she is a wild and crazy girl always on the go!!
She helps her 2 big sisters with their show steers and she loves helping daddy on the farm! She is such a blessing to all who know her!
Help us cheer on Steeley Jo!
July 11, 2018
Breelyn Cole, Age 4 | Lubbock, Texas
This week's warrior is: Happy, courageous & fiesty
Breelyn is a spunky 4-year-old who is not defined by CF!
Breelyn was diagnosed from her newborn screen, but our family did not have any idea that we were carriers. Ever since Breelyn's diagnosis we have been doing our best to stay ahead of the game and raise as much money as we can to help fund a cure!
So far, Breelyn is always willing to do treatments and take medicine so that she can be as strong and big as her older sister Brodye.
The most special thing about Breelyn is that she doesn't let CF stand in her way from doing anything she wants to do!
We love that rose, Breelyn!
july 4, 2018
Brianna Jackson, age 16 | Pasco, washington
This week's warrior is: Determined & courageous
Brianna is a 16-year-old high school student. She loves her family and spending time with her friends. Brianna aspires to be a pediatrician to help child with special needs.
She has 3 siblings, a brother, Josh, who also has Cystic Fibrosis and is 17 years old, her twin sister, and 12-year-old sister. They are both loved by family and friends.
Other things she loves to do is camping, attending church, and going to the mall with friends. In order to do all of these things, she has to keep up with her every day treatment and medication. But, she doesn’t let Cystic Fibrosis stand in her way!
Happy 4th of July, Brianna!
June 27, 2018
Riley Einck, Age 5 | Slayton, Minnesota
This week's warrior is: Happy, Strong & Sweet
Riley is a fun-loving 5-year-old boy. He loves any sport, basketball, baseball, soccer or wrestling. But mostly his favorite is football! He enjoys playing with his 8-year-old sister, Natalie, and he makes us all laugh. His favorite colors are purple and yellow.
Riley also has a lung disease called, cystic fibrosis.
Every year since he was born, our family and friends join in the Annual Great Strides walk through the Cystic Fibrosis Foundation, we design t-shirts for our team, Riley’s Racers! We have decided to let Riley design them this year. If you know him, they HAVE to have purple and yellow. He tells us, someday he is going to play for the Minnesota Vikings, and why wouldn’t we want to tackle this disease?
Riley will go to school full time this fall, he does enjoy learning and playing with his friends. He has a sly sense of humor and a loving heart. Riley lives the life of any other little boy, with a few added-on obligations. We remind him often to be diligent about hand-washing during cold and flu season. We help him take charge of his daily treatments. He does his inhaled treatments and oral medications every morning and every night.
Help us cheer on this week’s warrior: Riley!
June 20, 2018
Amanda Raiano, Age 25 | Yorktown Heights, New York
This week's warrior is: Selfless, Strong & Courageous
Amanda is a 25-year-old woman living with Cystic Fibrosis. Despite constant treatments, infections, and days of not feeling well, Amanda is always ready for the next adventure.
Amanda has a smile that can light up a room and laughter that is so contagious from the moment you hear it. Amanda has not only excelled as a patient living with CF but she now spends her days working as a nurse in an area hospital. This opportunity is her way of giving back and treating patients in a manner in which Amanda wanted to be treated when she was in similar situations. Amanda knows all too well the stress and anxiety of being a patient and this inspired her to go into the medical field. Amanda uses her joy for life and a positive attitude to help others at a time they most need it. She is knowledgeable about so much more than just the nursing aspect of her job. Amanda’s infectious spirit and never give up attitude make her a CF warrior.
She lives each day to the fullest and works to bring joy to others at all times. She is the true definition of selfless and caring.
June 13, 2018
Conlee Handshy, Age 3 | Zanesville, Ohio
This week’s warrior is: Resilient, Courageous & Sweet
Conlee is a fun-loving 3-year-old boy who happens to have Cystic Fibrosis. Conlee was diagnosed with CF when he was just 13 days old and has never once let it slow him down. He has hit some road bumps along the way already, but he has never faced a challenge that he hasn't conquered with grace and courage.
In his free time, he enjoys playing with his sister (Bexlee), running around, and driving around in his Power Wheels jeep. Conlee has struggled with his weight pretty much since day one and last November, when he had a feeding tube placed. He has taken on so much of his care already at just 3 years of age. He can do just about anything related to his tube and his treatments. It's very impressive how he just watches us do things and picks up on it so quickly. He never complains about doing his therapies, taking his medication, or doing his many daily tube feeds. He's just very mature and knows that these things have to be done before he can play. I honestly can't even comprehend how amazing he truly is.
Anyone who meets Conlee has a permanent smile on their face. He just makes everyone feel so happy when they're around him. I think above all, I just admire his love of life and his excitement about everything! He is my hero.
June 6, 2018
Jovi Phillips, Age 11 | Somonauk, illinois
this week's warrior is: Silly, Strong & Fiesty
Hi my name is Jovi and I have CF. I love swimming, skateboarding, roller blading! I also like watching old TV shows and Garfield. When I am in school, I am on the volleyball team and in the school musicals.
I have lots of dreams; I want to become an author, a forensic scientist for the FBI, a songwriter, a marine biologist, a veterinarian, and be on Zumbo's Just Desserts TV show.
If I had to describe myself in 3 words I would say I'm silly, strong, and feisty. ;) I want to do a lot in my life and I'm not going to let CF stop me. There are positive parts of CF, like my Psychologist Dr. Bree, and I got to go to Hawaii on a Make A Wish trip!
To the other kids with CF, I say don't let CF get you down, keep fighting!