Jacqueline Botta is immunocompromised and could not travel to Albany and Washington D.C. to raise awareness of kidney disease this year as she normally does due to the coronavirus pandemic. But that did not stop her and her mother, Marlene, from trying.
“The work and the fight do not stop because of the pandemic,” Marlene said. “There are still people living with kidney diseases getting treatments, and people are still participating in drug trials.”
Families with an immunocompromised individual are also suffering from “double the isolation” during the pandemic, she added, because they are taking extra precautions to prevent spreading Covid-19 to their relatives. In the Botta family, for instance, Marlene said, her husband, Anthony, a New York City police officer, pitched a tent in their backyard to sleep so he would not infect Jacqueline if he were to get the virus.
Jacqueline, who is now 19, was diagnosed with nephrotic syndrome — an umbrella term that describes irreversible damage to the kidneys’ filters — in 2016. At the time, she experienced low energy, swelling and stomach pain, and after a week, she had to be rushed to the hospital for dehydration from vomiting. That is when a doctor told her she has focal segmental glomerulosclerosis, a disorder that occurs when the kidney filters stretch out and scar. There is no known cause of the disease, and it is incurable.
“Inevitably, I’m going to need a kidney transplant,” Jacqueline previously explained to the Herald.
But she continued to attend H. Frank Carey High School and was on the Pirettes kickline team. She is now studying medicine remotely from Western Connecticut State University.
“Sometimes she looks so normal, you forget that she’s sick,” her mother, Marlene, said. “You meet her, and you don’t think she’s sick, but inside her body is attacking itself.”
To help find a cure for her and the 37 million other patients with chronic kidney disease, Jacqueline and Marlene have become leaders in raising awareness of nephrotic syndrome. Jacqueline has met with Assemblyman Ed Ra and State Sen. Anna Kaplan to have March 27 recognized as Nephrotic Awareness Day, created a “Kidney Fight Club” Instagram group, where 14 young adults can talk about their lives with nephrotic syndrome, and organized an annual walk at Eisenhower Park.
Marlene has also become a patient advocate for NephCure Kidney International, a nonprofit organization dedicated to finding a cure for nephrotic syndrome diseases, organizing and speaking at various NephCure events, and raising money for the organization.
But many of those events had to be canceled this year due to the pandemic, and Marlene said she has had to “pivot and create opportunities to keep funding research with events.”
She has held Zoom meetings with families of patients with kidney disease, and a virtual gala and silent auction on Nov. 12, which raised over $700,000 for NephCure’s programming, research and drug trial work.
Jacqueline also testified at a recent virtual Food and Drug Administration hearing about patient-focused drug development. She is going to start a precision medicine study soon, in which researchers will test her urine for a certain protein and create a medication regimen based on the results.
“We are at a very exciting time in the development of better treatments,” Marlene said, adding that the trial should put Jacqueline in remission.
To find out more about NephCure, visit NephCure.org.