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Amid devastating news, ‘Hamilton’ star and wife continue to shed light on epilepsy

Miguel and Kelly Cervantes continue to work to help other families and raise money for epilepsy research, as their 4-year-old daughter enters hospice care.

Miguel Cervantes performs the title role in “Hamilton” at the CIBC Theater.
Miguel Cervantes performs the title role in “Hamilton” at the CIBD Theater.
©2016 Joan Marcus

For the past three years, for seven shows a week, actor Miguel Cervantes has stepped into the role of Alexander Hamilton in the critically acclaimed musical “Hamilton” at the CIBC Theater in Chicago, filling the shoes of Lin-Manuel Miranda, no less.

It’s one of the most demanding and emotionally charged roles in contemporary musical theater, and undoubtedly a dream come true for the 41-year-old actor. The play’s storyline is, among other things, both uplifting — and heartbreaking.

And last Friday, life imitated art for Cervantes and his wife, Kelly, who revealed their 4-year-old daughter Adelaide is now in hospice care after battling childhood epilepsy for most of her life.

In her Inchstones blog posts, Kelly Cervantes has chronicled the life of their daughter, who has suffered from the illness since she was 9 months old and diagnosed with a severe and incurable form of epilepsy known as Infantile Spasms (IS).

“No child or family should have to go through this, but they do, and we are. That said, we feel so fortunate to be surrounded by such a compassionate community that has gone out of their way to let us know they are thinking of us as we journey down this hospice path,” Kelly Cervantes wrote in her Oct. 4 blog post.

The couple, who are also parents to 6-year-old Jackson, has been very outspoken about epilepsy over the course of the past three years, most notably through CURE (Citizens United for Research in Epilepsy), which raises funds for research into a cure for the devastating illness.

“Living with epilepsy sucks,” Kelly told People magazine last year. “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.”

In a passionate Sun-Times letter to the editor earlier this year, Kelly Cervantes used the diagnosis of epilepsy and its impact on patients and their families as one reason for upholding the Affordable Care Act.

“There are few things that cause a caregiver to someone with special needs more anxiety than threats to repeal the Affordable Care Act,” she wrote. “Most of the country now seems to understand that it’s wrong to deny health insurance coverage due to preexisting conditions ... I want to make sure everyone understands what is at stake for families like mine. This isn’t a red or blue issue, a conservative or liberal issue. It is a life or death issue.”

For the time being, Cervantes continues to perform seven shows a week.

And while Kelly uses her writing to help other families cope with chronic illness, and to thank everyone for their outpouring of support, Miguel, along with music composer Ira Antelis,turned to music to express his emotions, writing “’Til the Calm Comes,” a song for his young daughter and his family, and a way to help raise money for epilepsy research. Proceeds from sales of the song, which also features some of the “Hamilton” Chicago cast, go to CURE.

In it, Cervantes sings: “I’ll be here/With my sword and my cape fighting off these fears/And before it’s too late I’ll make ‘em disappear/And if the sky is too dark/We’ll light up the spark and blow away the haze/ So you can clearly see my face/And know right here is where I will remain/Til the calm comes.”

The family could not be reached Monday for comment.

November is National Epilepsy Awareness Month. For more information, visit epilepsy.com or cureepilepsy.org.