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May 6, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honorees, Glenn and Cara O’Neill

Posted by Jennifer Huron

In a race against time, Glenn and Cara O’Neill have quarantined their family for nearly one year to try and save their daughter, Eliza.

Eliza, 5, has Sanfilippo Syndrome, a rare degenerative disease characterized by the body’s inability to break down complex carbohydrates, resulting in a build-up of cellular waste in the brain and central nervous system that causes neurological… Read More

May 5, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Savannah Hollis

Posted by Jennifer Huron

Savannah Hollis, a healthy three-sport athlete who had just turned 21, was one week into her senior year at the University of Louisiana at Lafayette when a sudden internal bleeding episode nearly killed her and left her severely paralyzed on her right side.

 

Her symptoms came on with dizziness, which she tried to sleep off with a nap, followed by… Read More

May 2, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Sophia Hanson

Posted by Jennifer Huron

At the age of 15, Sophia Hanson was attending boarding school in Chicago at Lake Forest Academy.  She loved running for the cross-country team, where she would run up to six miles a day and compete on a regular basis, pushing her body to extraordinary limits.

Now at 18 years old, Sophia is preparing for New York University in the… Read More

May 1, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Bailey Gribben

Posted by Jennifer Huron

“The good thing about being diagnosed with Neurofibromatosis is that I can help other people with it,” says Bailey Gribben.

Bailey and his mom remember the days before his diagnosis:  one day on the phone, he casually said he needed put the receiver to his good ear.   This prompted a visit to the doctor, and it was then that they… Read More

April 28, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Tony Ferrandino

Posted by Jennifer Huron

“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.”

These are the courageous words of Tony Ferrandino, who lost his son, Drew, to Batten Disease in September 2014.  He and his wife, Katie, and their sons, Gavin and Drew, had lived a relatively normal… Read More