Jasmine Carosella’s life was a narrative woven with threads of adventure, imagination and fierce, multi-year fighting against a rare and aggressive cancer. At only 22 years old, she succumbed to rhabdomyosarcoma, a rare childhood cancer. Now, her parents, Michelle and Celestino Carosella are doggedly determined to preserve her legacy. In a tragic twist of fate, just days after Jasmine’s passing, Celestino discovered he too had a rare form of cancer: adrenocortical carcinoma. Their story is symbolic of the immense hardships that individuals with rare cancers suffer. It shines a light on the challenges to obtain timely, safe, effective treatment options.
Jasmine’s path to victory was filled with remarkable successes and overwhelming challenges. She completed her college education, traveled around the world, and even got married—all before her premature death by suicide. As her parents told us, that even though Jasmine’s life was sadly very short, she was able to “fit a lot into her short life.” Her fight against cancer was anything but simple. Jasmine made it through a brutal 13-hour surgery that resulted in the removal of multiple organs and sections of her intestines. Her medical team was stunned to find less than a year later that her cancer had returned.
The Battle Against Rhabdomyosarcoma
Rhabdomyosarcoma is a rare and aggressive childhood cancer that primarily strikes children and young adults. Jasmine’s diagnosis brought with it a host of misfortunes, not just physically, but mentally and emotionally as well. Her parents could only look on as she suffered through round after round of treatments and surgeries to try to cure the disease.
“Jasmine was really adamant that children in the future that end up with rhabdomyosarcoma have an opportunity to live a long life,” shared Michelle. This hope and dream expresses Jasmine’s wish that future patients don’t go through what she went through and have better options made available to them.
Although they were given compassionate access to a treatment, that treatment came just a bit too late for Jasmine. Her story underscores why we need to do better and faster with cancer research. Perhaps most importantly, it highlights the need for more treatment alternatives for rare diseases.
A Father’s Grief and New Challenges
The heartbreak didn’t stop with Jasmine’s death. Only days after her funeral, Celestino Carosella received more devastating news. He went on to receive the heartbreaking diagnosis of adrenocortical carcinoma, an extremely rare cancer that affects the adrenal glands. This turn of events has more recently thrown him into an unexpected new battle. He perseveres in the face of the anguish resulting from the loss of his child.
We were just flabbergasted … you’ve got more chance of winning Powerball,” Celestino remarked about the likelihood of both father and daughter being diagnosed with rare cancers so close together. His experience has intensified his advocacy for change in cancer care, emphasizing that access to treatment should not be dependent on one’s social standing.
“It shouldn’t matter whether you’re Gina Rinehart or a 20-year-old uni student — we should all have equal access to these treatments,” he stated firmly. Celestino has re-fired their passion for advocacy. He’s determined to help make sure no one has to go through what he and Jasmine went through.
Advocating for Change
In the wake of their losses, Michelle and Celestino Carosella have become fervent advocates for improved cancer care, particularly for patients with rare forms of cancer. Through it all, they remain dedicated to fighting for an end to the systemic barriers that still keep people from accessing timely treatments.
Christine Cockburn, an expert in cancer care, supports their cause, stating, “We’ve still got a barrier to overcome before we’re really doing the best cancer care that we possibly can.” Far too many patients continue to experience unwanted delays and complications in receiving the treatments that are right for them. This raises questions about the challenges presented by the rarity of their conditions.
“The failure to act now, when we have the evidence, the momentum, and the tools to do better, is not an oversight. It’s a choice,” said Cockburn, highlighting the urgent need for action from healthcare providers and policymakers alike.
They’re not the only ones on the Carosellas’ wavelength. They’ve built momentum, gaining support from hundreds of organizations and other stakeholders who share their vision for better cancer care. His response follows increasing alarm over the link between rare cancers. In response, he launched new initiatives aimed at improving outcomes for those impacted. “Since coming to government, we have invested heavily in improving cancer care and outcomes,” he stated.
Butler is deeply committed to working with Rare Cancers Australia. Together, they will advocate to increase patient access to treatment for the 1 in 6 Americans who are affected by rare cancers.
