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Dec 2, 2005 7:12 pm US/Mountain
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Teenage Jazz Singer Finds Hope In New Treatment
by Molly Hughes
DENVER (CBS4) ―
The 14-year-old singer from Colorado, who has already made her mark in the jazz world, made her mark on the medical world as the first patient in the Rocky Mountain region to get a new treatment for AVM.
The deadly disease has stopped Erienne from singing, just as she was starting a promising career has a jazz vocalist. The AVM turned her life into a waiting game.
She recently was waiting at Swedish Medical Center with her mother Chris, father Paul and sister Lauren.
Dr. Don Frei of Radiology Imaging Associates was about to pioneer a new treatment with Erienne. If it worked, she could eventually be cured of the condition that could otherwise be fatal.
Erienne remained calm while Frei explained the risks of the treatment.
"She's absolutely at peace with what's happening," Erienne's mother Chris said. "It's the same kind of feeling I get when I watch her perform. She becomes fearless when she needs to be."
Erienne lives to sing. She has already made her mark on the local jazz scene at the age of 14.
She collapsed during a rehearsal last July. It did not take long for doctors to diagnose the problem. Erienne had an AVM, a malformation of blood vessels deep in her brain. Most people never know they have an AVM.
"They can just collapse and die," Frei said.
Erienne's AVM could rupture if her blood pressure rises, so doctors ordered her to remain quiet. She spent her days working at the computer and writing in her journal.
Erienne has learned about life from the AVM, though.
"Death is a part of life," Erienne said.
"The bigger an AVM is, the harder it is to fix," Frei said as he showed where the AVM was in Erienne's brain.
Frei said Erienne's AVM must be fixed.
Frei began the procedure that could restore Erienne to health. He sent a catheter from inside her leg all the way to the AVM inside her brain.
Frei slowly injected a newly approved material called ONYX into the catheter. When the ONYX reached the AVM, it moved like lava into the malformed vessels.
Then the ONYX hardened, cutting the malformation off from its blood supply. This was the second time Erienne has had ONYX injected into her AVM.
"It worked just like clockwork, just like last time," Frei said after the surgery. "We blocked off another 25 percent today, so it's more than 50 percent sealed off. She's doing great, that's the key, she's awake and doing fine."
"Doctor Frei was really happy, he said they were high fiving," Chris told her daughter.
The morning ended in celebration. Erienne moved one step closer to the day the waiting will end and she can sing again.
"I honestly mean it when I say it's an honor to be around her, she inspires me," Chris said.
Doctors hope that with additional ONYX treatments, Erienne's AVM could shrink and be removed.
Her medical care could cost $250,000. Her family does not have insurance.
Friends and family have helped Erienne produce a commercial quality CD of her vocal work. All the money from sales will help the family pay medical bills.
Additional Resources
- Erienne's CD, The Scenic Route, can be purchased online at www.erienneromaine.com or by mail. Donations can be sent to Musicians Relief Fund, 4505 W. 36th Ave., Denver, CO 80212.
(Copyright © MMV CBS Television Stations, Inc.)