Christian Singer Jordan St. Cyr Shares 5-Year-Old Daughter's Journey with Sturge-Weber Syndrome (Exclusive)

“She became the miracle I didn't know I needed as a dad,” the singer tells PEOPLE of his 5-year-old daughter Emery

Christian artist Jordan St. Cyr can’t help but rave about his little girl.

“She became the miracle I didn't know I needed as a dad,” St. Cyr, 41, tells PEOPLE of his 5-year-old daughter Emery. “She is fiery, she is spicy, and she has a wit that is going to change the world. She came out of the womb with this gorgeous red hair and a bright red crimson birthmark on the left side of her face.”

It was a birthmark St. Cyr noticed immediately upon the birth of his daughter back in November 2018 at a Winnipeg hospital, but initially, the nurses in the delivery room didn’t seem to be alarmed. “They said it looked like some bruising,” remembers St. Cyr, a 16-time GMA Covenant Award winner. “And I said, ‘not a chance.’”

It was a parental premonition that ended up being right, as the birthmark pointed to the real possibility that something was wrong.

“They had her in for an MRI within the first 24 hours,” St. Cyr remembers. “Instinctively we knew that ]the birthmark] could end up being superficial, but more often than not, it's revealing to what is going on underneath.”

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Canadian doctors eventually discovered that what was "going on underneath" was St. Cyr and his wife Heather’s "worst fear" – their baby daughter had Sturge-Weber Syndrome.

“It looked devastating and looked debilitating and looked like a quality of life that no parent would desire for their child,” recalls St. Cyr of his initial reaction to the diagnosis of Sturge-Weber Syndrome, a rare congenital disorder that can affect the skin and nervous system. “The left side of her brain was suffering from atrophy, so it was shrinking. Her blood vessels on the left side of her face were also three times the size that they should have been, and it was those blood vessels that were stealing blood from her brain.”

Essentially, Emery’s brain wasn’t getting the blood it needed to grow. It was this predicament that led to a series of serious seizures beginning when Emery was just 5 months old.

“Watching your little girl go through this, you think she's dying,” quietly admits the father of four. “The first year was impossible. I felt helpless. I felt desperate. And in those moments, I just felt like a failure. I could see no step forward.”

Now, five years into Emery’s health struggles and far too many seizures later, St. Cyr says he has found a way to see the positiveness of it all.

“I can't believe I'm saying this, but [Emery’s diagnosis] was the biggest gift I could have ever received,” says St. Cyr, who now lives in Nashville, allowing Emery to take advantage of the care of the exemplary team at Vanderbilt Children’s Hospital in Nashville. “I thought so much of life was in my control. But it wasn’t. That is what this little girl revealed to me.”

A number of these revelations ended up revealing themselves in the songs that now make up St. Cyr’s new album My Foundation.

“In some ways, my songwriting has brought me salvation,” says St. Cyr whose empowering single “Rescue” currently finds itself in the top 10 on the Christian music charts.

“Songs have been my saving grace. If you live life long enough, nobody is exempt from hitting the rough patches. And so, these songs are life rafts for me. They're life rafts for my wife and hopefully, my kids so as they get older, they will see that myself as a father did everything in every facet of my life to serve them well.”

And while the road ahead of Emery and her family is somewhat of an unknown one, St. Cyr says that he and his family remain hopeful.

“While her MRIs reveal that she should be doing a lot worse, she is doing so good,” he says of Emery, who has been seizure-free for over a year and a half. “Her humor is a huge marker to show that she is doing really well. Her intellect is there. She's able to learn things like any other kid right now. She graduated from preschool last month. Other than that birthmark and some weakness on the right side of her body, you wouldn't know.”

Because if anyone can beat the odds, Emery can.

“[Emery] was given all the tools she needed to live her best life,” St. Cyr concludes. “A lot of us wear our insecurities on the inside where people cannot see them. And this little girl has this beautiful birthmark on her face, and she doesn't have the choice. Her insecurity is on the outside, and she just rocks it. She just does. She just doesn't care. And it's teaching me so much as a human being and how to live my own life.”

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