Girl, 4, couldn’t walk or speak after getting rhabdomyolysis, which killed NYC Marathon runner, from common cold
A New Jersey tot was left unable to walk and speak after developing rhabdomyolysis from the common cold, according to her father, who’s trying to raise more awareness of the rare disorder that killed a New York City Marathon runner this week.
Ali Modica was just 4 when an apparent mild sickness resulted in 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 the common cold running through the body,” Ali’s father, 38-year-old Joe Modica, told The Post, explaining how he, his wife, and their two younger sons, also fell ill with mild symptoms around the same time on Jan. 6, 2024.
“My 7-month-old got it first. Coughing, sneezing. And then it just ran through everybody. She was the last one to get it so we didn’t think anything of it,” he added.
“On the Friday night, Ali went to bed on her own. Then she came in our bed in the middle of the night. That wasn’t uncommon,” Joe said.
“But then in the morning, I felt her body. It was really cold, and she wasn’t warming up. She didn’t want to walk, so I brought her downstairs and she didn’t want to eat breakfast,” he said.
“So I told my wife, ‘Her lips are purple; she has to go to the hospital.’ That was the sign she was oxygen-deprived,” the dad from Old Bridge said.
At the hospital, “we found out her heart was failing,” said Joe, who has documented Ali’s struggles on social media.
Due to a lack of pediatric ECMO at the initial hospital, Ali was taken via ambulance during a severe winter storm to a hospital two hours away in Philadelphia.
As soon as they got to the cardiac floor, Ali “coded,” and what had once seemed like a common cold or the flu was now full-blown heart failure.
“She had no heartbeat for 18 minutes,” Joe explained.
Ali’s kidneys, lungs, heart, and liver were all failing, but doctors were able to get a pulse back and hooked her up to an ECMO machine, and she was kept on a ventilator for several days.
“Then we find out that she has rhabdomyolysis,” Joe said, adding that the previously healthy young child with no allergies had to be kept on 24-hour dialysis to clean her blood.
Rhabdomyolysis, or rhabdo, is a rare condition, often brought on by overexertion, in which the 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 subsequently faced prolonged ventilator and dialysis support.
“If we didn’t get her to the hospital when we did, she wouldn’t be here today,” Joe said.
Today, Ali is 7 and is still suffering from a brain injury that left her unable to walk or talk, requiring full-time care from her parents and intensive physical and occupational therapy that the family is having to cover out of pocket, due to it not being covered by their insurance.
The family has pursued stem cell treatments using Ali’s saved umbilical cord, traveling to Florida for the latest round this March.
“She’s making great strides; she’s getting stronger every day,” Joe said.
Joe wanted to speak out about his family’s story to raise awareness of the condition after hearing of the tragic death of Rachel Apa, a 24-year-old fit and healthy former college athlete who died during Sunday’s New York City Marathon from what was later discovered to be rhabdomyolysis.
“I’m 38 years old. I’d never heard of this in my life until my daughter had it,” he said.
“When my wife and I heard about Rachel, we looked at each other like we saw a ghost. I still get goosebumps. No one knows about this,” Joe said.
“We are grieving for Rachel and her family. It’s information that needs to be out there more. It might have to be something the Marathon organizers are more aware of,” he said.
He warned of the need for more awareness among athletes, their families, and medical staff to better recognize the risks of over-exertion and post-viral complications.
“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 said.
“And keep hydrating.”
Today, Joe says he, his wife, and their two sons, Joe, 5, and Carmine, 3, are “surviving,” as Ali continues to slowly improve.
“She is gaining a lot of strength. She’s initiating steps. She laughs, she smiles. She’s still there. She understands what’s going on. 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 small victory, we celebrate,” Joe said.
“Ali’s dream was to go to school. She loved learning way ahead of her milestones. Potty trained herself at a year and a half. She didn’t make it to kindergarten,” he said.
“I have a lot of faith in her. She fights every day. And my wife and I are going to advocate for her for as long as we live. And we’re going to try everything possible 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 around two-thirds of its $125,000 target.