'A Cure Didn't Come in Time for Our Daughter, But We're Not Giving Up': Hamilton Family Opens Up About Losing Their 3 Year Old to Epilepsy & Fighting to End the Disease
As Kelly Cervantes looked for her family’s new home in Chicago, where her husband, Miguel Cervantes, would star in Hamilton, their sweet daughter was rushed to a hospital near where they lived in New Jersey for what would later be diagnosed as epilepsy and infantile spasms. In an inspiring talk with Parents.com, the couple opens up about Adelaide’s battle—one that ultimately took her life last month.
It was already a time of upheaval in the Cervantes family. Miguel had just landed the lead role in the Chicago production of the musical Hamilton. Kelly gave her notice in her lucrative restaurant-industry job, and flew out to Chicago to find a place to live and a new preschool for the couple’s older son, Jackson. She left Miguel to hold down the fort in New Jersey with Jackson and their 9-month-old daughter Adelaide.
But all was not well in New Jersey. “Adelaide was doing a funny head drop, and Miguel took her to the ER,” recalls Kelly. “I was in an Airbnb when I learned that Adelaide had been diagnosed with infantile spasms, an innocuous term for a devastating form of childhood epilepsy.” She booked the next flight to New Jersey, and rushed to the hospital from the airport: “By the time I made it back, she was a shadow of the girl I left behind.”
In the three years since Adelaide's diagnosis, Kelly and Miguel cared for Adelaide while raising awareness about her condition and funds to support research. Parents.com interviewed the family two months ago, just as Adelaide was entering home hospice care. “The only thing standing between us and a cure is money for research,” says Kelly. “Science can’t catch up with her, but we want to help so her struggles aren’t in vain.” At that time, the couple thought their daughter would have many months left, talking about how they planned to stay in Chicago near Adelaide's care team after Hamilton closes in January. In a heartbreaking turn of events, Adelaide died in Kelly’s arms on October 12—shortly before her fourth birthday.
The First Hints of A Problem
Kelly had a normal pregnancy, but, in hindsight, she says Adelaide showed signs of trouble from birth. “Her body was very floppy, and she lost 10 percent of her birth weight in the first week,” Kelly recalls. “At her two-month pediatrician appointment, she still didn’t have the head control you’d expect.” She waited another two months for an appointment with a neurologist. “We were living in ignorant denial. I didn’t want to be perceived as a ‘crazy mom,’ who is worried about everything. I kept telling myself she’s fine.”
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Still, the early testing didn’t reveal much except low muscle tone. “Every test was coming back with no issues, and then she started to progress, smiling, laughing,” Kelly recalls. It was the calm before the storm: Around the same time as Miguel’s third audition for Hamilton, 7-month-old Adelaide suffered her first seizure. It lasted 15 to 20 seconds, but Kelly says it felt like hours. Now the results of her EEG (a test to measure electrical activity in the brain) were abnormal. Two months later when Kelly was looking for housing in Chicago, Miguel rushed Adelaide to the hospital. This was when the infantile spasms started. Adelaide stayed in the hospital a month while doctors figured out a medication combo that could keep them at bay. “When I saw Adelaide in the hospital, she had completely changed. She didn’t even cry when she got a shot,” says Kelly.
The Internal Struggle
When Adelaide left the hospital, the Cervantes family found a home in Chicago, and Adelaide received a new medical care team. Five days in, her oxygen levels dipped requiring another trip to the hospital; a month later she had a gastrostomy tube placed for feedings since the seizures had taken away her ability to swallow liquids and chew solids.
At the same time, Miguel’s career had taken off by storm. “He had the crazy high of the opening night of Hamilton, and singing at a Chicago Bears game,” says Kelly. She admits that during that time, she felt jealous. “Miguel got to leave and go to work and get applause and I didn’t,” she says. Then she found her voice too: Becoming a champion of epilepsy awareness through fundraisers, speaking engagements, and her blog Inchstones.
As the months passed, Adelaide’s condition worsened. She needed oxygen tanks, was in and out of the hospital, and had to be resuscitated twice. The bright spot: her bond with Jackson. “When she’s having a seizure, he’d run over and cuddle her and sing a lullaby,” says Kelly. “He’d tell me that he didn’t need my help because his singing stopped the seizures.” He’d hug her before school in the morning, and ask how she was when he got home. He’d play with her, making up silly games or pretending to wrestle. “In a world where she is constantly coddled and cared for, he treats her more normally than anyone else,” says Kelly.
However, he did get frustrated last year because Adelaide’s care took up so much of her time. “At the end of kindergarten, he thought he had the worst family. He’d ask why Adelaide gets me, and he has to go to a sleepover at his friend’s house,” says Kelly. The family hired a night nurse to help relieve some of the pressure of her constant care.
The Final Weeks
Last spring, When Adelaide was 3 years old, the Cervantes family learned that her disease was degenerative; scans revealed that her brain was shrinking. She had lost the ability to suck her thumb (a major source of comfort) and was growing less responsive to voices and cuddles. Sometimes she’d have a half-dozen seizures in a single day. Sometimes she’d scream for hours, and couldn’t be consoled.
By summer, the couple made the difficult decision to transition her to home hospice care. She wouldn’t have exhaustive therapy sessions anymore—the main goal was to keep her comfortable. “She barely opens her eyes, but she still can squeeze your finger,” says Kelly, who read to her and Jackson often.
Jackson’s love for her had grown strong and fierce—he’d cuddle her all the time and tell his classmates about her “brain checks.” Two weeks before she died, a plaster mold was made of the two siblings holding hands. Miguel wrote on Instagram: “It was one of the most beautiful things I have ever seen. My wife used some very strong language warning me not to break it.” Not to fear: Adelaide’s bond with Jackson and everyone who knew her will remain forever strong.
If you’d like to donate to help support epilepsy research, go to cureepilepsy.org