A 21-year-old 2020 high school graduate in Florida received the celebration of a lifetime despite the COVID-19 pandemic. Sarena Champagne is in need of a new heart, but doctors won’t allow her to have the transplant because of her developmental disabilities. Without the transplant, Sarena is expected to live for less than two more years, and her family is grateful that the community pulled together to celebrate her accomplishment.
“I was just blown away with the generosity and kindness of complete strangers,” said Sarena’s mother, Jaime. She had posted about Sarena on the Adopt a Volusia County Senior 2020 Facebook group run by Staci Tramont, and the community jumped at the opportunity to organize a celebratory parade.
Sarena was born with a chromosome deletion that has caused her to experience developmental disabilities, seizures in childhood, and dilated cardiomyopathy. Though she is 21, she functions more like a five-year-old. “I call her my forever baby,” said her mother. “She’s always going to be my little girl.”
At age 10, Sarena was diagnosed with congestive heart failure. She spent months in the hospital and nearly died, but her family was told she was ineligible for a heart transplant that could save her life because she has developmental disabilities. She came close to death many times, but then when she was 11, the medical team changed their minds, and Sarena was approved for a heart transplant. A curve in her spine led to surgeries to place rods in her back and she nearly died during this time period from infection.
“[…] she kept fighting, no matter what was thrown at her,” said Jaime. “She’s pretty amazing.”
As she entered high school, Sarena’s mother switched her from private to public school in hopes of giving her a more normal high school experience including walking across the stage at graduation to receive her diploma. COVID-19 took that dream away.
Now her heart is failing again.
“It’s a huge accomplishment for any child, but for her it’s kind of her first and her last,” said Jaime. “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.”
Tramont set up an event to celebrate Sarena’s graduation. Two hundred people attended to drive by the family’s home with signs and balloons. Jaime says they will “never forget this.”
It is far too common for doctors and hospitals to deny life-saving transplants to individuals with developmental disabilities. Doctors have long told parents of children with Trisomy 18 that heart surgery wasn’t worth it, but parents are pushing back and their children are living longer, healthier lives because of it. During the COVID-19 pandemic, it was revealed that many states have laws that allow for discrimination against people with underlying health conditions.
For children with disabilities, having a team of doctors willing to fight for your life if you have developmental disabilities can be the difference between life and death. Every human being has intrinsic value and should be treated with the same respect and compassion.
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