Florida grad with terminal illness surprised with parade
Graduation is a big deal for DeLand High School senior Sarena Champagne.
The 21-year-old with a terminal illness endured a slew of medical problems and overcame trauma that might stop someone else in their tracks. Even the coronavirus pandemic, which deprived her of a chance to walk across the stage in a traditional ceremony, wasn’t able to prevent a celebration.
Sarena’s mom Jaime posted about her daughter in the Adopt A Volusia County Senior 2020 Facebook group, and almost before she knew what was happening, the community was organizing a parade in her daughter’s honor.
“I was just blown away with the generosity and kindness of complete strangers,” she said of those who weren’t initially even aware of the details of Sarena’s story.
She was born with a chromosome deletion that typically causes developmental disabilities. At age 21, her functionality is closer to that of a 5-year-old.
“I call her my forever baby,” Jaime said. “She’s always going to be my little girl.”
But the syndrome brought other problems. She had a seizure disorder for the first five years of her life, and at age 10 was diagnosed with dilated cardiomyopathy, which led to congestive heart failure. She needed a transplant.
She spent months between three hospitals, coming close to death multiple times. She was originally rejected for a transplant because of her developmental disability, but eventually was approved for the live-saving surgery around age 11.
Then, curvature in her spine made the next few years of her life difficult as doctors placed rods in her back that gave her an infection. In trying to correct those problems, Sarena almost died three times.
“But she kept fighting, no matter what was thrown at her.” Jaime said. “She’s pretty amazing.”
By the time she got to high school, Jaime knew she wanted her daughter to have the traditional experience. Sarena had previously attended private school, but Jaime wanted her to be able to make friends her age, to go on community outings and, eventually, to be able to walk across the stage at graduation and receive her diploma. That’s not possible now that the coronavirus pandemic has upended traditional end-of-the-school-year rituals. And for Sarena, it’s an even bigger loss.
Her heart is failing again. Transplants aren’t meant to last forever, and doctors predict that Sarena has less than two years left before this one will fail. But her developmental disabilities means she’s ineligible for another heart. That’s why graduation is such a big deal to the family.
“It’s a huge accomplishment for any child, but for her it’s kind of her first and her last,” Jaime said. “As painful as it is, I know the reality of the situation. I know that my daughter isn’t going to move out and go to college and have a career and have a family. That’s not reality for us. Every moment is so precious for her.”
Knowing just a fragment of that story, the creator of the Adopt a Volusia County Senior 2020 Facebook page Staci Tramont got to work. Within a day of Jaime posting about her daughter on the page, an event had been created for people who wanted to participate in a parade to celebrate her accomplishments.
In the end, almost 200 people showed up in DeLand to drive past the Champagne home with signs, balloons and words of encouragement for Sarena.
“I really, honestly don’t even have words,” Jaime said. Later, she thanked those who participated on Facebook:
“We will never forget this.”
This story originally published to news-journalonline.com, and was shared to other Florida newspapers in the USA TODAY Network - Florida.