Raising a Child with Sturge-Weber Syndrome: Christian St. Cyr's Story

Christian artist Jordan St. Cyr is full of praise for his 5-year-old daughter, Emery.

By Mian HamidPublished 8 days ago • 3 min read

Raising a Child with Sturge-Weber Syndrome Christian St. Cyr's Story

Christian artist Jordan St. Cyr is full of praise for his 5-year-old daughter, Emery.

“She became the miracle I didn't know I needed as a dad,” St. Cyr, 41, tells. “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.”

When Emery was born in November 2018 at a Winnipeg hospital, St. Cyr immediately noticed the birthmark. Although the nurses initially thought it was just bruising, St. Cyr had a feeling it was more serious.

Raising a Child with Sturge-Weber Syndrome Christian St. Cyr's Story

His instincts were right. Within the first 24 hours, Emery underwent an MRI, which revealed that the birthmark was indicative of deeper issues.

Canadian doctors soon discovered that Emery had Sturge-Weber syndrome, a rare congenital disorder affecting the skin and nervous system. This diagnosis was devastating for St. Cyr and his wife, Heather. “The left side of her brain was suffering from atrophy, so it was shrinking,” St. Cyr explains. “Her blood vessels on the left side of her face were also three times the size they should have been, stealing blood from her brain.”

Emery's brain wasn’t receiving the blood it needed to grow, leading to serious seizures starting when she was just five months old. “Watching your little girl go through this, you think she's dying,” St. Cyr confesses. “The first year was impossible. I felt helpless and desperate. I felt like a failure.”

Raising a Child with Sturge-Weber Syndrome Christian St. Cyr's Story

Five years into Emery’s health struggles and numerous seizures later, St. Cyr has found a way to see the positive side. “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 to access care at Vanderbilt Children’s Hospital. “I thought so much of life was in my control, but it wasn’t. That is what this little girl revealed to me.”

Raising a Child with Sturge-Weber Syndrome Christian St. Cyr's Story

These experiences have deeply influenced St. Cyr’s music, including his new album "My Foundation". “In some ways, my songwriting has brought me salvation,” says St. Cyr, whose single “Rescue” is 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. These songs are life rafts for me, my wife, and hopefully my kids.”

Despite the uncertain road ahead, St. Cyr remains hopeful. Emery has been seizure-free for over a year and a half and is doing remarkably well. “While her MRIs reveal that she should be doing a lot worse, she is doing so good,” St. Cyr says. “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. She graduated from preschool last month. Other than that birthmark and some weakness on the right side of her body, you wouldn't know.”

Raising a Child with Sturge-Weber Syndrome Christian St. Cyr's Story

Emery’s resilience and confidence inspire St. Cyr every day. “She was given all the tools she needed to live her best life,” he 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 doesn’t care. It’s teaching me so much about how to live my own life.”

The Quran - Chapter Ar-Rahman : 60 - 63

Is there any reward for goodness except goodness?

Then which of your Lord’s favours will you both deny?

And below these two ˹Gardens˺ will be two others.

Then which of your Lord’s favours will you both deny?

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Mian Hamid

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