Hamilton star Miguel Cervantes and his wife let cameras in to raise awareness for people living with seizures
Hamilton star Miguel Cervantes and his wife Kelly gave PEOPLE’s sister site Parents a glimpse at their life caring for their daughter Adelaide before her death from infantile spasms.
Adelaide passed away on Oct. 12, just a few short days before her fourth birthday, and spent nearly her entire life battling seizures no one can still quite explain.
In the moving video, Kelly, 37, underlines just how scary it was to live with that reality every day.
“Every single day, we live with in a life or death circumstance with our daughter,” she says in the video, recorded before Adelaide died. “Tomorrow is not guaranteed. I will scream our story from the mountain top so that our daughter’s journey has not been in vain. That all makes it worth it.”
The family, which includes the couple’s older son Jackson, was thrown into an overwhelming situation when Adelaide had her first seizures at the same time as Miguel, 42, was auditioning for the titular role in the Chicago production of Hamilton.
“Adelaide was seven months old when she had her first seizure. That was also the time that Miguel was auditioning for Hamilton, so our emotions were all over the place,” Kelly recalls. “We’re getting this information about our daughter that is totally overwhelming, and then on the flip side, Miguel is going for arguably the biggest musical to ever happen in the history of Broadway.”
“I got the job and began a crazy transition in our life, but it all feels very squished up into one experience of being terrified for my daughter and being excited for myself. On stage, it’s never very far from my brain,” Miguel admits.
“We have done nearly every test available and have moved on to research studies and still, no one can tell us what the root cause is,” Kelly says, months before they made the hard decision to enter Adelaide into hospice care. “We are fighting for science to catch up for her. There is no cure for epilepsy.”
While they never lost hope, the Cervantes family were eventually forced to admit Adelaide into hospice care after her disease was found to be degenerative and her brain started shrinking. Adelaide died shortly before her fourth birthday.
“The Cervantes family is heartbroken to announce that their baby girl Adelaide Grace passed away early Saturday morning,” read a statement issued to PEOPLE.
“She was held in the loving arms of her family as she peacefully achieves the ‘calm’ for which they’ve been searching for so long,” the statement continued. “They would like to extend their deepest, heartfelt gratitude to all who have reached out with words of support and prayer and will continue to feel all the love as they go through this difficult time.”