From the time she was in middle school, Hot Springs teen, Naomi Smith’s track event of choice was the hurdles. She said the trick to the race is putting the fear of crashing out of your mind, no matter how many times you wipe out.
“Oh, I have crashed a couple of times,” she says. “I’ve actually got scars from crashing, but I guess I just focus on the rewarding feeling of finishing. Yes, you’ll clip a hurdle or two, but just knowing that you got over it and the success you get and the feeling that you have after a race is so rewarding.
“So, sometimes I crash and burn, but I know that I’ve put a lot of work into it, so I’m kind of used to pushing myself. I’m just not scared of it.”
Naomi is the first to admit she drew a lot of her no-fear attitude from her family, not the least of whom is her youngest sister, Scarlett. The ten-year-old provides her older sister with all the motivation she needs by not letting cystic fibrosis keep her from what she loves to do.
“On the outside, my sister looks completely normal. You would never know that she has CF,” Naomi says. “She is so upbeat and so resilient; she never lets anything hold her back. If she wants to go for something, she’s not going to let [CF] keep her from it.”
Inspired by her sister, Naomi has been an outspoken advocate for CF awareness and fundraising beginning in junior high. She’s given speeches on the subject to a variety of audiences, from hometown civic clubs to Congressional delegates in Washington D.C. At an early age Naomi was addressing large crowds about what the disease is and what patients and their families go through.
“I spoke to a few different churches and then I spoke to my entire student body, which was over six hundred kids,” says the 2023 Lake Hamilton High School graduate. “It definitely took a little bit of adjustment when I first started speaking, but I was so passionate about what I was speaking about it that it never really scared me that much. I knew what I was doing was going to help my sister.
“I also went up to D.C. and I was speaking to congressmen. That first meeting, I was absolutely terrified, but after that, I fell in love with advocacy. So, in the next meeting, I felt like no one could stop me.”
Per the National Heart, Lung and Blood Institute, cystic fibrosis is a genetic condition affecting a protein in the body present in cells, tissues and the glands that make mucus and sweat. The condition causes mucus, a normally slippery substance that protects various linings inside the body, to become thick and sticky and clog up pathways which makes organs more susceptible to infection.
The lungs and pancreas are particularly susceptible to the disease; airway-clogging mucus can trap germs in the lungs leading to infection and other issues, while in the pancreas, the disease hinders nutrient absorption. Liver disease and infertility in men are other complications of cystic fibrosis.
About forty thousand people live with CF in the United States, and more than 100,000 people have been diagnosed with CF across ninety-four countries, cutting across age, nationality, and ethnic groups, according to the Cystic Fibrosis Foundation (CFF).
But for as sobering as those facts are, they pale in comparison to seeing it up close in the life of someone you love, as Naomi did when Scarlett was just a toddler.
“When she was four years old, Scarlett was admitted into the hospital for pneumonia and that was very, very scary,” she says. “Walking into that hospital and seeing that she was so sick and there was nothing I could do, it really broke my heart. I knew I had to find a way to help her.
“I was thirteen years old at that time and I thought, ‘I can’t help her medically, so I’m going to get creative. I’m going to find a way.’”
Naomi started a Great Strides team, which is a fundraising mechanism for the CFF, and also began her public speaking career. She was selected for her first Washington D.C. trip as part of Teen Advocacy Day.
“I think it’s a really unique opportunity that teens get to be represented there, because we are able to share our stories in a really unique perspective while talking about certain policies that we want to get passed,” she says of the experience.
Her passion and persistence were such that in time, she would be selected a National Teen Advocacy Day Intern, an opportunity extended to only two teens in the country every year. While that looked great on a résumé, Naomi is more focused on how the role allowed her to weigh in on pending legislation that could help her sister and those just like her.
“Every year [in Washington] we’ll have a different policy we’re advocating for,” Naomi says. “This year was about a particular act that we’re trying to get passed through Congress, the PASTEUR Act. Basically, it helps push more antibiotics through the pipeline in a very, very smart way.
“That’s really important for people who have CF, because they face antibiotic resistance a lot and there are not enough antibiotics out there. So that’s what we were pushing for this year.”
Naomi’s activism over the past five years also included local walks to raise money for the cause, something she relishes for the connection it gives her to other families in the same situation. In addition to that, she and her family were always there for each other, whether it was Naomi’s tennis or track competitions, her fifteen-year-old brother’s activities, or Scarlett’s passion for dance.
“My parents have never, and I love this about them, never held Scarlett back from anything she wants to do,” Naomi says. “It’s like, you want to do dance? Let’s do it. Let’s go for it. And I just love watching my younger siblings play sports and my sister dance. I love being the big sister that cheers real loud in the stands.
“My hope for [Scarlett] is that CF never keeps her from doing anything, and she is able to do whatever makes her happy. I know CF will always be a part of her, but I don’t want that to stop her from anything in life. I want her to be able to live a full life, happy and healthy.”
Next year, Naomi moves into the next chapter of her life, that of a nursing student in her hometown at National Park College. She does so with a firm sense of purpose and abundant confidence, a byproduct of the advocacy she’s done on behalf of her younger sister.
“I’ve really have learned confidence from doing all this,” she said. “Being able to speak to all different kinds of people and just the way I carry myself, that’s definitely one of the important things I have taken away from this. I want people to know what [CF] is and why it is so incredibly important that we spread awareness and raise money and why it is so important to me and my family.
“But I have also learned through my years of advocacy that CF looks different for every family because there are many different types of CF. My sister is lucky in that she qualifies for some of these newer medications, but I advocated alongside a family from Oregon whose daughter did not. I want to speak up for all families, especially for those who aren’t as lucky as mine. Advocating for my sister, I realized that I was not just advocating for her, but for all voices of those with CF who need and deserve to be heard.”
To donate to the cause, visit the Cystic Fibrosis Foundation (cff.org). To donate to Team Scarlett specifically, visit fightcf.cff.org, click on Great Strides and enter “Team Scarlett” under Find a Team.
