A New Jersey child was left unable to walk and talk after developing rhabdomyolysis from a cold, according to his father, who is trying to raise awareness of the rare disease that killed a New York City Marathon runner this week.
Ali Modica was just 4 years old when a seemingly mild illness led to heart and kidney failure, leading to a brain injury that left her requiring full-time care and intensive physical and occupational therapy.
“We thought it was a cold that was running through the body,” Ali’s father, Joe Modica, 38, told the Post, explaining how he, his wife and their two youngest sons also fell ill with mild symptoms around the same time, on January 6, 2024.
“My 7-month-old daughter got it first. She was coughing, sneezing. And then it spread to everyone. She was the last to get it, so we didn’t think about it,” he added.
“On Friday night, Ali went to bed by herself. Then she came into our bed in the middle of the night. It wasn’t uncommon,” Joe said.
“But in the morning I felt her body. It was very cold and she wasn’t warming up. She didn’t want to walk, so I took her downstairs and she didn’t want to have breakfast,” he said.
“Then I said to my wife: ‘Her lips are purple; she needs to go to the hospital.’ It was a sign that she was lacking oxygen,” Old Bridge’s father said.
At the hospital, “we found out his heart was failing,” said Joe, who documented Ali’s struggles on social media.
Due to the lack of pediatric ECMO at the original hospital, Ali was transported by ambulance during a severe winter storm to a hospital two hours away in Philadelphia.
As soon as they reached cardiac floor, Ali “coda” and what once seemed like a simple cold or flu was now full-blown heart failure.
“She had no heartbeat for 18 minutes,” Joe said.
Ali’s kidneys, lungs, heart and liver were all failing, but doctors managed to regain a pulse and hook her up to an ECMO machine, and she was kept on a ventilator for several days.
“Then we find out she has rhabdomyolysis,” Joe said, adding that the young child, previously healthy and allergy-free, had to be kept on dialysis 24 hours a day to purify her blood.
Rhabdomyolysis, or rhabdo, is a rare disease, often caused by overexertion, in which muscles disintegrate, causing toxic materials to enter the bloodstream and leading to kidney and heart failure.
Ali’s heart fully recovered after five days, although she then faced prolonged support on ventilation and dialysis.
“If we hadn’t brought her to the hospital then, she wouldn’t be here today,” Joe said.
Today, Ali is 7 years old and still suffers from a brain injury that leaves him unable to walk or talk, requiring full-time care from his parents and intensive physical and occupational therapy that the family must pay for out of pocket because it is not covered by their insurance.
The family continued stem cell treatments using Ali’s preserved umbilical cord, traveling to Florida for the final round in March.
“She’s making great progress; she’s getting stronger every day,” Joe said.
Joe wanted to share his family’s story to raise awareness about the disease after learning of the tragic death of Rachel Apa, a fit and healthy 24-year-old former college athlete who died Sunday during the New York City Marathon from what was later discovered to be rhabdomyolysis.
“I’m 38 years old. I had never heard of it in my life until my daughter got it,” he said.
“When my wife and I heard about Rachel, we looked at each other like we’d seen a ghost. I still get goosebumps. No one knows about it,” Joe said.
“We mourn Rachel and her family. This is information that needs to be spread more. Perhaps it should be something that the marathon organizers are more aware of,” he said.
He warned of the need for greater awareness among athletes, their families and medical staff to better recognize the risks of overwork and post-viral complications.
“Trust your instincts. You know your child. The first signs are that your child is not walking or has sore legs. A viral infection can cause it,” Joe said.
“And keep hydrating.”
Today, Joe says he, his wife and their two sons, Joe, 5, and Carmine, 3, are “surviving,” while Ali continues to slowly improve.
“She’s gaining a lot of strength. She’s taking steps. She laughs, she smiles. She’s always there. She understands what’s happening. She knows who her brothers are,” he said.
“She knows what’s bad and what’s good, what’s sad. So she’ll smile and laugh. Every day, every little victory, we celebrate,” Joe said.
“Ali’s dream was to go to school. She loved learning long before her goals. She was potty trained at one and a half years old. She didn’t go to kindergarten,” he said.
“I have a lot of faith in her. She fights every day. And my wife and I are going to defend her as long as we live. And we’re going to do everything we can to give her a normal life again,” Joe added.
A GoFundMe set up to raise money for Ali’s ongoing treatment has so far raised about two-thirds of its $125,000 goal.
Gn Health
