In 2020, Anthony Di Laura and Jackie Cucullo were over-the-moon. The married couple had just learned that Jackie was pregnant with their first child. Anthony and Jackie were thrilled to start a family. But they faced an unexpected challenge when, in August of that year, Anthony was diagnosed with pseudomyxoma peritonei, a rare cancer that often begins in the appendix. Over the next months and years, shares ABC 7 New York, Anthony’s condition worsened. Surgical procedures and chemotherapy were unsuccessful. In 2022, Anthony, now 35 years old and a father of two, was told that he might have to go to hospice.

But things seemed to be on the up-and-up when Anthony learned about a multi-organ transplant surgery, performed at the Cleveland Clinic, which had been successful in treating another patient with pseudomyxoma peritonei. This surgery would be incredibly invasive, with Anthony’s small and large intestines, spleen, and stomach all being replaced. When he was approved for the surgery, Anthony was so excited at his new lease on life.

Unfortunately, in a decision of shocking cruelty, Empire BlueCross BlueShield denied coverage for the operation, which they deemed too ‘investigational.’ As Anthony repeatedly asked them to reconsider, even sourcing literature and support letters from physicians, his condition grew worse. He began experiencing worsening pain and requires assistance with eating. Eventually, fearful for his future, Anthony and Jackie submitted an emergency appeal to ask for assistance.

Earlier this week, the insurance company shared that they had chosen to approve Anthony’s surgery. However, he and Jackie are still fundraising to support his treatment if need be. If you would like to contribute and donate to this cause, you may do so here.

What is Pseudomyxoma Peritonei?

The National Organization for Rare Disorders (NORD) describes pseudomyxoma peritonei as:

a rare malignant growth characterized by the progressive accumulation of mucus-secreting (mucinous) tumor cells within the abdomen and pelvis. The disorder develops after a small growth (polyp) located within the appendix bursts through the wall of the appendix, and spreads mucus-producing tumor cells throughout the surrounding surfaces (e.g., the membrane that lines the abdominal cavity [peritoneum]).

Pseudomyxoma peritonei may spread throughout the abdomen, but typically does not spread throughout the rest of the body. Doctors are not sure what causes this rare growth to develop. It affects an estimated 2 out of every 1 million people, and affects males and females at equal rates. Typically, symptom onset appears in the late 40s. Symptoms can include:

• Increasing abdominal size/girth (“jelly belly”)
• Abdominal pressure and discomfort – though it is usually not painful to touch
• Inguinal hernia (in males)
• An ovarian mass (in females)
• Changes in bowel habits
• Appetite loss