At the moment Miguel Cervantes was auditioning for the titular role in the Chicago production of Hamilton, his baby girl was in a hospital, having seizures no one could explain. After missing some basic milestones in her early months, Adelaide, Miguel and wife Kelly’s second child, had her first seizure at 7 months old. Tests resulted in a diagnosis of epilepsy.
“Talk about a whirlwind May 2016,” Miguel, 41, tells PEOPLE. “That’s the definition of a crazy month.”
Miguel landed the role and four months later the family — which includes son Jackson, 6 — made the move from Maplewood, New Jersey, to Chicago, as Adelaide’s condition continued to worsen, puzzling her parents and doctors.
“The crazy thing about epilepsy is that it’s not just about neurology, but the rest of the body is affected, too,” Kelly, 36, tells PEOPLE. “While we focus on the neurology because seizures are Adelaide’s big issue, she sees seven doctors regularly and a handful of specialists when needed. We don’t know what causes her seizures — two-thirds of people with epilepsy don’t know. And you can’t try treating something when you don’t know what’s causing it.”
At 9 months old, Adelaide, now 3, was diagnosed with infantile spasms. “That’s when we really started to lose her,” says Kelly. “We haven’t seen her laugh or smile in a year. We just want her to laugh or smile, have quality of life. That, for us, would be enough. We live in this world where we hope for the best. But if we lost her next week, we’d be devastated but wouldn’t be surprised.”
Kelly says Adelaide’s health ebbs and flows; there are “rough patches,” like early this summer when she didn’t go more than two weeks without spending time in the hospital and even wound up in the ICU. But a home nurse who visits four days a week has been “life-changing,” Kelly adds.
Through the haze, there have been several shining lights for the Cervantes family. There’s Jackson — “the most empathetic person you’ll ever meet,” Miguel says — who keeps Kelly and Miguel going on the daily. “He’s a rock star,” Kelly adds.
There’s the team at CURE (Citizens United in Research for Epilepsy), which Kelly connected with after the family settled in Chicago. “Susan Axelrod, the founder, came and visited us in the hospital in one of our early stays,” Kelly recalls. “They’ve been so kind, so supportive.”
There’s the Hamilton “family,” as Miguel calls them, including creator Lin-Manuel Miranda, who helped Kelly and Miguel with a 2017 fundraising campaign. “They’ve all been amazing with help and raising awareness,” Miguel says. “I also can’t imagine the families out there that don’t have the means we do, or don’t have a parent who can stay home,” Kelly adds. “Hamilton has provided us with both of those things.”
And then there’s Michael Schultz, an entrepreneur and founder of Chicago’s Fairgrounds Coffee & Tea, who met the Cervantes family through a mutual friend and within minutes, was ready to help.
“I was crying at their story,” Schultz recalls to PEOPLE. “I said, ‘Miguel, you’re a dad, I’m a dad. I’ll do anything I possibly can to help you.’ ” Putting his creative mind to work, Schultz thought of the Hamilton hit “My Shot,” which Miguel was already using for the #MyShotAtEpilepsy Campaign, and with coffee on the brain, created Adelaide’s Blend, a bagged coffee sold at Fairgrounds Coffee & Tea locations, Chicago Mariano’s stores and javaya.com. One-fifth of proceeds from each bag sold benefits CURE.
“It’s all we drink in our house and it’s delicious!” Kelly says. “Plus this is just an incredible way we can get into people’s homes and make them aware of epilepsy, which is so misunderstood. One in 26 people will be diagnosed in their lifetime. It’s not rare, but it’s not spoken about. And we’re so grateful to Michael for what he’s done.”
“Miguel and Kelly are heroes,” Schultz says. “They have so much going on in their life, and instead of saying ‘Woe is me, look at what we’re dealing with,’ they are using their power and taking something negative and making into a mission to help others, so no other parent has to do this. It’s extremely inspiring.”
When asked how they do stay so strong with Adelaide’s constant hospital visits, continued seizures and round-the-clock care, Miguel’s answer is simple: “We have to,” he says. “We can’t constantly live with sadness regret and pain. We’d be poor parents. Some days are really, really terrible and staying in bed sounds like the better choice, but we have to go to work. Our son needs us to be there. At the end of the day, it’s what we have to do.”
Last month, Adelaide turned 3, and Kelly and Miguel were certain to celebrate their little girl. “I used to plan events for a restaurant group in New York City and would sometimes roll my eyes at the moms coming in with elaborate birthday plans for 1-, 2- or 3-year-olds,” recalls Kelly, who paused her career to take care of Adelaide and Jackson when the family moved to Chicago. “But we were doing the same — we weren’t positive she’d make it to 3, but we wanted to celebrate and thank everyone who has helped us get here, because it took a village.”
With that milestone behind them, Miguel and Kelly are focused on Adelaide’s next steps (you can follow along on Kelly’s blog) and helping CURE raise funds so that other families don’t follow in said steps.
“Living with epilepsy sucks,” Kelly says. “But maybe 10 or 20 years from now there won’t be another family like ours in the hospital with a doctor coming up to them saying, ‘Your child has epilepsy, and we’ll start throwing darts at a board to see what sticks.’ There’s only so much we can do for Adelaide on any given day. But there’s a lot we can do to help spread the word.”