When Hamilton closes in a few short months, many of its stars will pack up and leave Chicago, but not Cervantes and his family, if they can help it. Chicago is now home, in part because of the struggles they have faced in the Windy City.
[Ads /]
"Instead of just being this guy at the top of this amazing show, I am now the guy who plays Hamilton who is fighting a battle," Miguel said.
His daughter Adelaide, now 3, was diagnosed with a severe form of childhood epilepsy around the same time Miguel was cast in "Hamilton." As he uprooted his family from New York to Chicago, her future was uncertain.
The disease has robbed Adelaide of milestones. Miguel's wife Kelly has transitioned from working outside the home to the role of constant caretaker and nurse.
"My baby girl used to sit in a high chair and bang toys on the table, she used to eat by mouth," Kelly said. "She would laugh and track us across the room. She engaged with us. And now she's gone."
"We are fighting so that no one ever has to count how many seizures happen in a day," Miguel said.
[Ads /]
Raising awareness and money for epilepsy research is the most powerful tool Kelly and Miguel believe they have left.
"She's still fighting. But when we can see that it's too much..." Kelly said. "And I've told her so many times, 'You just let me know, baby girl. I love you and I'm going to love you forever. And I'm with you.' But she's dying. And we can't do anything about it."
"Adelaide's Army" is made up of doctors, nurses and friends who have contributed to the 3-year-old's care. They also give Kelly and Miguel the little bit of breathing room they need to channel their grief into purpose. Even 7-year-old brother Jackson has taken on the role of activist, teaching his classmates about what a seizure looks like.
"She puts her arm out. It kind of vibrates and that means she's going to have a seizure," Jackson said.
Kelly writes about the family's struggle in her blog Inchstones, while Miguel uses his celebrity to put the spotlight on her advocacy.
[Ads /]
"I think of myself as a monkey with a cymbal, right?" he said. "So people can look at me. 'Hey, look at me, look at how exciting this is!' And then you should stop looking at me and look at my wife."
"I want a cure for epilepsy," said Kelly. "I want the fear that people have of talking about it, I want that fear to end. I want my baby girl to live, and I don't get that. So I'm going to fight like hell for the rest of it."
Adelaide has inspired the 'My Shot at Epilepsy' fundraising campaign. Donations support an organization called Citizens United for Research in Epilepsy, or CURE.
November is epilepsy awareness month and also when CURE holds its annual fundraiser in Chicago. Click here for more information about the CURE 2019 Chicago Benefit.
Click here for more information about and to listen to Kelly Cervantes' podcast, "Seizing Life."