“One in a Million Diagnosis:” Family Raises Awareness after 16-Month-Old is Diagnosed with JMML

Marco and India Biviano felt like something bad was happening to their young son Luca. His stomach was distended and painful. Luca frequently developed chest infections that required round after round of antibiotics. Despite bringing him to the doctor’s multiple times, the parents received no answers. Maybe he had irritable bowel syndrome, one doctor suggested. Others brushed it off as the various illnesses that little kids tend to get. 

But when the symptoms persisted, first for a month and then for six, India and Marco continued the fight to help their son. Finally, a pediatrician suggested that the family come to the hospital for further testing. That same night, the family received news that nobody wants to hear. Luca had juvenile myelomonocytic leukemia (JMML). 

In reporting by Zesha Saleem of Metro UK, Luca’s aunt Olivia (“Liv”) shared more about the family’s journey. JMML is a rare and severe form of childhood blood cancer. It’s estimated to impact just one in every million children annually. Since Luca’s diagnosis, Liv says, the entire family has had to stay at the Ronald McDonald House by the Manchester Children’s Hospital; Luca remains hospitalized as he undergoes treatment. He has finished his first round of antibiotics but will require additional treatment in the future, including bone marrow transplantation. Learn how you can support the cause and sign up for the bone marrow registry. 

In addition to raising JMML awareness, Liv is also running a GoFundMe to support Marco and India with any necessary expenses. If you would like to contribute, you can donate here

Learn about Juvenile Myelomonocytic Leukemia (JMML)

Also known as: Chronic myelomonocytic leukemia of infancy

Juvenile myelomonocytic leukemia is a rare blood cancer that affects young children. JMML predominantly affects children under four years old. It is also slightly more common in males than females. Doctors know that around 25% of cases result from NF1, PTPN11, or CBL gene mutations. However, the remaining cause of the other 75% of cases is still unknown.

JMML occurs when white blood cells called myelocytes and monocytes do not mature into healthy white blood cells. These abnormal cells crowd healthy cells out of bone marrow, leading to the characteristic symptoms. Although JMML is aggressive and sometimes difficult to treat, it is curable in around half of all cases. Stem cell transplants are typically the only effective treatment. 

Symptoms of juvenile myelomonocytic leukemia may include:

  • Frequent infections
  • Appetite loss
  • Petechiae (small, tiny red dots under the skin)
  • Stomach pain or swelling
  • Swollen lymph nodes
  • Extremely pale skin
  • Easy and unusual bleeding or bruising
  • Unintended weight loss
  • Irritability
  • Fever
  • Pain below the ribs
  • Dry cough
  • Fatigue and lethargy
  • An enlarged liver and/or spleen
  • Anemia (low red blood cell count)
  • Failure to thrive
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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