CHICAGO — They arrived in the city to embark on a new chapter, career-changing opportunity in a mega-hit musical. But at home, a life-altering diagnosis took center stage. One month after their daughter Adelaide’s passing, Chicago “Hamilton” star Miguel Cervantes and his wife Kelly opened up about their daughter’s journey and how they’ll keep fighting for her and all those impacted by epilepsy.
Each night, as her husband told the story of Alexander Hamilton on stage, Kelly Cervantes documented her family’s story online.
“It was important to me that people saw her the way that we saw her as this feisty, opinionated little wonder woman who was strong as hell and fought every day of her life,” she said.
With hundreds of social media posts, a weekly blog and eventually a podcast, she logged countless hours at her computer, eloquently describing the complexities of daily life in the Cervantes family household. Sometimes her husband would take a turn.
From Miguel’s blog post:
At the end of the day, I am a dad that goes to work and has a pretty sick kiddo at home. Maybe she is screaming uncontrollably. Maybe she has spent the day sleeping and mostly unresponsive. Maybe there have been several seizures. Or, maybe this day she has been ok. I take all of that with me and head to the office. I pull my hair back, put on a long jacket and then it’s, “What’s your name, man? Alexander Hamilton!”
“I don’t think any of us will ever understand what her struggles were, what exactly she was going through,” Miguel Cervantes said. “Whenever she could or would turn and look and maybe stop and listen, you could see how strong this little person was.”
Adelaide was born in October 2015 and joined big brother Jackson. But within months it was clear Adelaide wasn’t reaching the typical milestones. As Miguel Cervantes was in the midst of auditions for the lead role in “Hamilton,” Adelaide was undergoing medical tests.
“Everything I’ve ever dreamed of, everything I’ve ever wanted as an actor, everything I’ve ever wanted as a performer and this unbelievable tragedy that’s going on finding out that your child is very, very sick. (It was) all wrapped into the same moment,” he said. “And if I could have given it all back I would, if I could choose a healthy child and not 'Hamilton,' I would choose the child, but we don’t get those kinds of choices.”
Adelaide was diagnosed with a severe form of pediatric epilepsy known as infantile spasms. But there were other co-existing conditions, lack of muscle tone, breathing problems and severe allergic reactions, that were all made even more complicated by her daily seizures. The root cause was an underlying neuro-degenerative disease doctors could not identify.
At three years of age, Adelaide was developmentally a newborn.
“She would just stop breathing, her brain wouldn’t tell her to breathe,” Kelly Cervantes said. “And then we’d have to go in. And usually, it was when she was sleeping. So I would have to wake her up and get her breathing again.”
Adelaide required around-the-clock-care. But in stolen moments, Kelly Cervantes shared online the small victories along with the deepest lows of caring for a child with complex medical needs. Readers were captivated by Adelaide, and the family used the platform to make an impact.
“We’ve embraced this life,” Miguel Cervantes said. “And we will continue to yell and scream until something changes.”
Their voices have been heard. They have tirelessly raised awareness of epilepsy through Citizens United for Research in Epilepsy, or CURE, a Chicago-born organization that raises funds for patient-focused scientific studies.
“I truly believe that the only thing standing between us and a cure is money for research,” Kelly Cervantes said. “Science didn’t catch up to Adelaide, but I will make it my mission to make sure that it catches up to a family down the road.”
Earlier this year, an MRI brought devastating news.
“Her brain was degenerating, and there was nothing that we could do at that point,” Kelly Cervantes said. “By the end of the summer when she was awake, she was crying, and nothing we could do could comfort her.”
That’s when the couple transitioned Adelaide to hospice care.
Kelly Cervantes wrote about the decision on her blog in an entry titled, ‘Dear Adelaide.’
Dear Adelaide …
I imagine this may be as tough to read as it was to write, but it’s time. You will not be getting better this time. The skills you have lost will not be regained. I am so sorry that your body has betrayed you in this way.
A short series of posts followed, sharing moments from Adelaide’s final days before she passed away at home in October.
Thursday, as they spoke about their precious daughter’s journey, Kelly and Miguel Cervantes said they will keep fighting.
“Just because our little girl lost that fight doesn’t mean … to me it feels selfish to then throw our hands up and say, ‘Well, it didn’t work for us,’” Kelly Cervantes said. “So, for me, the fight has to continue.”
“We’ll keep her struggle alive and her fight alive and for the next Adelaide, for someone else’s Adelaide, that they won’t have to do,” Miguel Cervantes said. “And that will be her legacy that we’ll keep alive.”
You can help Kelly and Miguel Cervantes through their fundraising challenge called “My Shot at Epilepsy.” The family is raffling off a “Hamilton” package for someone to see the very last Chicago show. All proceeds will go to CURE – Citizens United for Research in Epilepsy.
The organization is also hosting a fundraising event on Monday, November 18.
To learn more about Kelly and Miguel’s My Shot at Epilepsy challenge, check out cureepilepsy.org/myshot or myshotatepilepsy.org. All of the money raised through the My Shot at Epilepsy challenge will go to CURE.
To learn more about Kelly and Miguel and read Kelly’s blog, go to kellycervantes.com
To learn more about CURE, check out cureepilepsy.org