Macomb teen with rare syndrome eager for a miracle
By Alysia Burgio
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MACOMB, Michigan (WWJ) — After being diagnosed with a rare neurological syndrome, a teenager in Macomb is eager for a miracle.
“My life pretty much flipped completely upside down,” said Skye Streck.
Two years ago, Streck was living the life of a 17-year-old full of smiles, especially when Irish dancing, which is one of her many passions.
In the blink of an eye, it all changed.
“Skye has PANS. It stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and she was diagnosed with that after having asymptomatic mono,” said Nicole Grayber, a family friend.
Grayber says PANS is rare and significantly affects the brain.
“It causes verbal tics, motor tics, OCD (Obsessive Compulsive Disorder), which also leads to sensory overload and anxiety, depression,” said Grayber.
“She can have flares every day. She can seem perfectly normal, and then the next second she’s not, so it’s…challenging,” said Eddie, Skye’s mom.
Once a month, Streck gets IV infusions. It helps mask the symptoms but doesn’t cure them. What is a stem cell infusion?
“Stem cells are infused through the spinal cord, unlike IVIG which is infused through your veins. And the stem cells go over the brain barrier in which the iv infusions do not,” Streck stated.
The procedure is costly, upwards of $50,000. Streck and her family are hoping donations will lead to a miracle.
“It would mean the world to me. I would get my life back,” Streck stated.
In the meantime, Streck is using social media to spread awareness of PANS.
“We’ve seen messages from people all over the world where she is encouraging them and giving them hope to face obstacles, and I could not be more proud of her,” Grayber stated.
And recently, Streck put her Irish shoes back on.
“She is able to dance sometimes and just to see even if she can go and do one dance…it’s great!” said Eddie.
The family is holding a fundraising event at “The Classic Lanes” in Rochester this Saturday from 6-9 p.m.
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