A 4-year-old New Jersey girl, Ali Modica, was left permanently unable to walk and speak after developing rhabdomyolysis, a rare condition triggered by what initially appeared to be a common cold. The same disorder recently led to the death of a New York City Marathon runner.
Ali's father, Joe Modica, shared that his daughter became ill on January 6, 2024, along with his wife and their two younger sons. While the others experienced mild symptoms, Ali's condition rapidly worsened. She was found in the middle of the night with a cold body and displayed symptoms of oxygen deprivation, prompting her father to take her to the hospital.
At the hospital, Ali's heart was failing, and she was transferred to a Philadelphia hospital due to a severe winter storm impacting local transport. There, she experienced cardiac arrest and had no heartbeat for 18 minutes. Doctors were able to revive her and placed her on an ECMO machine and a ventilator. Subsequent tests revealed she had rhabdomyolysis, which led to her heart, kidneys, lungs, and liver failing. She required 24-hour dialysis to clear her blood.
Rhabdomyolysis, often referred to as rhabdo, occurs when damaged muscles release their proteins and electrolytes into the bloodstream. This can lead to kidney failure and other complications. While often associated with extreme physical exertion, it can also be triggered by viral infections, as in Ali's case.
Ali's heart recovered after five days, but she faced prolonged ventilator and dialysis support. The lack of oxygen during her cardiac arrest resulted in a brain injury that has left her requiring full-time care and intensive physical and occupational therapy. Her parents are covering these costs out-of-pocket as they are not fully covered by insurance.
Now 7 years old, Ali is undergoing experimental stem cell treatments and is showing progress, with her father describing her as a "fighter" who is gaining strength daily. She can initiate steps, laugh, and smile, and understands her surroundings and family members.
Joe Modica decided to share his family's story to raise awareness of rhabdomyolysis after learning of the death of Rachel Apa, a 24-year-old runner who collapsed during the NYC Marathon and later died from the condition. He emphasized that the disorder is not widely known and urged greater awareness among athletes, their families, and medical professionals.
"Trust your gut. You know your child. The first signs of it is your child not walking, or having pain in [their] legs. A viral infection can bring it on," Joe advised. He also stressed the importance of hydration.
The family has established a GoFundMe to help cover Ali's ongoing medical expenses, which has raised approximately two-thirds of its $125,000 goal.