Bella Reed is a vibrant 14-year-old Lafayette girl with an active lifestyle. She’s a star student at Cathedral Carmel who loves cheerleading and cheers for both her school and a competitive squad.
But it’s not always easy.
Bella also has cystic fibrosis, which requires extensive breathing treatments in addition to taking more than 50 pills a day. CF is a chronic genetic illness that causes persistent lung infections and limits the ability to breathe.
Bella was in Washington, D.C., this week as a special guest of U.S. Rep. Clay Higgins for President Donald Trump’s first State of the Union address.
“I’m just so grateful Bella is healthy enough to be an ambassador for CF,” her mom, Noelle Orlando Montgomery, said. “And I’m so thankful to Clay for taking such an interest in CF and for his commitment to finding a cure.”
The story of this unlikely alliance began a few years ago when Higgins was filling in at a CF fundraiser in Youngsville. There he met Bella and learned about her battle against the disease. Since then, Montgomery said, he has been a steadfast ally in increasing awareness and pushing for research dollars for CF.
“Bella’s fight to overcome cystic fibrosis is a testament to her powerful and moving spirit,” Higgins said. “I am honored to … share her story with others as we take action to develop new treatments and research that mitigates the effects of cystic fibrosis.”
Higgins has been working with the National Heart, Lung, and Blood Institute’s cystic fibrosis division to support research efforts and sustained federal funding.
He is also planning to introduce legislation that would improve care for pediatric patients as they transition to adult care.
The trip has been a bit of a whirlwind for mom and daughter. They learned of the invitation last week, arrived in the capital Monday night and flew home Wednesday.
In addition to attending the State of the Union address, Bella’s visit included lunch with Higgins in the congressional dining room and a tour of the capitol.
And, of course, she found time for a quick mani-pedi Tuesday morning.
Because, after all, “you can’t go to the state of the union with your nails all raggedy!”
Bella said everyone made her feel very important. The level of security was impressive and she got to see things in person that many Americans never get the opportunity to see.
Montgomery was worried the president’s speech might be a little stodgy for a 14-year-old, but Bella loved it.
She thought Trump was hilarious and she loved sitting so close to Melania and Ivanka Trump. There was also real emotion in the room, she said. She had to fight back tears several times during the address.
Bella wasn’t one of the visitors Trump mentioned during his speech, but she was OK with that. After hearing the stories of other invited guests, she said, “those people were real heroes and they deserve to have their stories told. I was just happy to be sitting with them.”
But the real hero to Bella is the man she calls “Mr. Clay.” She has always believed there will be a cure for CF, but knowing that Higgins is fighting for a cure makes her feel like it’s that much closer.
“I can just be a kid,” Bella said, “because I know there’s big people out there fighting for me.”
Finding a cure for CF is much more than a talking point for Higgins, Montgomery said. “He doesn’t stop. He really puts everything into it. He is spending his term trying to find a cure.
“And he made Bella feel like such a princess.”
About cystic fibrosis
In the United States, more than 30,000 Americans live with cystic fibrosis, with nearly 1,000 new cases diagnosed each year. Seventy-five percent of people diagnosed are age 2 or younger, yet those who live past childhood have a life expectancy of just 37 years. Although the predicted median survival rate for cystic fibrosis patients has quadrupled in the last 50 years, the complexity of the disease and general lack of data on adult cystic fibrosis patients has hindered research.