NBC’s The Voice’s Sam Cerniglia Speaks About His Family’s Connection to Rare Disease

October 31, 2013

A classically trained opera singer, who describes himself as a “soulful crooner,” left the hallways of Columbia College this year to try his luck at a national vocal competition. Sam Cerniglia had heard of “The Voice” but never imagined he’d be getting his first audition for it in the same rehearsal space his own band uses, singing the judge, Cee Lo Green’s, Forget You.

“Well, I wasn’t going to sing Opera,” Sam laughs. “But I guess that worked!”

It had. Sam got notice that he’d earned an audition in front of the judges.

It wasn’t the first time and it won’t be the last time a Cerniglia sibling cheered for one another. As Sam took his place on stage during an earlier episode of this season’s NBC’s The Voice, sisters Emmy and Sophie stood backstage, nervously waiting for the judges to turn around. They’re a tight knit group, bonded together not just by the support they now give, but by the hardships they’ve faced in the past.

The Cerniglia family has felt worse anxiety than they had watching their only son and brother’s performance that night. Sam sat down with Global Genes | RARE Project to talk a little bit more about the rare diseases that turned their world upside down.

Born and bred in Fruitport, Michigan, Sam was always close with his two sisters. Both girls always had physical triumphs to overcome early in life. And though it remained a mystery as to what their symptoms meant or where they came from, Sam recalls the day his sister Sophie was finally, belatedly, diagnosed with cystic fibrosis.

“I understood on some level what was going on,” Sam said. “My parents tried to protect us all from what it truly meant— and I appreciated that from them. Protecting us and helping us maintain our innocence through such a horrible ordeal. This was something that was not going to be able to be cured. She was sick. And there wasn’t anything I could do— and that was the first time I felt the true guilt.”

All his life, Sam had been healthy—and so it was a shock to both himself and the rest of his family when a second sister, Emmy’s, health began to decline at age 17. Suddenly, the world had become a blur for the young teen.

“She wasn’t able to balance a checkbook anymore,” said Sam. “Simple concepts were very difficult for her. So my parents had her IQ reevaluated. We thought she had dyslexia. When she graduated, it became much more profound. Her IQ had dropped about 20 points. ‘What’s going on?’ was the question.”

The family took radical steps to find a solution.

“We worked through so many different hospitals— and she ended up having brain surgery. It was a learning hospital and we were not aware that there would be students working on my sister’s brain. When she went in, she came out and she couldn’t walk.

We moved on to other diagnoses. She started having seizures. Lyme Disease, we were told. In our minds, she was supposed to be getting better; she was in and out of The Mayo Clinic during a five-seven year journey. And finally, one day, we had our answer: Batten’s disease. Both my parents had to pass that along. We found out through a process called genome exome sequencing.”

Sam_Rare_DiseaseWhen asked if he also feared he’d be diagnosed with a similar disease, Sam shook his head. “I wasn’t ever afraid because I watched the two of them be fearless. I was never afraid of it— and many times I wished that it was me instead.”

But Sam’s journey would be very different from his sisters, and as they held their breath backstage that night, their eyes lit up as the judges began to turn around.

With the heat of the spotlights on his face, Sam didn’t seemed phased by the gravity of being evaluated right there on camera.

“I’ve watched both of my sisters being constantly judged, and being in the spotlight and always being looked at– different, in a bad way,” said Sam.

“Sophia has a disease; Emmy has a disease. They were kind of always on display. And I looked at how they were able to handle that. The biggest thing I learned is just to authentically be myself, to take a look inward and say this is who I am— what I am, there’s no separating music from me. There is no separating batten’s disease from Emmy. No reason any of us should ever be ashamed of who we are as people.

“I try to make sure that it’s expressed musically too. My biggest recommendation is to authentically be yourself. Don’t be worried about what other people think.”

Now that his run on the show is complete, Sam isn’t stopping here.

“It’s a whole new world of opportunities now,” he says, “In the future, I’m planning on putting together an album that is fully mine artistically— I’m writing that now and hopefully will be recording it soon..”

Sam is also continuing to get involved in the rare disease community.

“I’m still getting connected with the Batten community. Together they’ll be helping me  set up performances and interviews and to help raise money for the cure. With cystic fibrosis, my sister has been heavily involved in the community in Michigan—they have a fundraiser, a bid for bachelors with bachelorettes. When she called I said: “yes—yes, put me on the books.”

The VoiceSam plans on heading out to tour later this year.

“I want to thank everyone who held out hope for me on the show. I usually call everyone who comes to my shows “my family,” and I just want to say a thank you to all those who will continue to keep an eye, ear, and a heart out for me—I feel like we all have so much to give.”

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