Friday, April 10, 2009

You're the Cure on the Hill Advocate Spotlight: Michelle Ballasiotes

As You're the Cure on the Hill 2009 approaches, we continue to profile some of the remarkable advocates who will travel to Washington, D.C. to meet with lawmakers on behalf of heart and stroke patients. Today, meet... Michelle Ballasiotes from Georgia!

Michelle's mother shared her story:
In November 1997, Michelle was born just one day shy of 36 weeks. The pregnancy was uneventful, with a normal amniocentesis at 20 weeks. Then at 29 weeks gestation we received the news that our baby had a brain abnormality. The ventricles in Michelle’s brain were enlarged and the probable diagnosis was hydrocephalus (an abnormal accumulation of cerebrospinal fluid [CSF] in the brain). A wonderful neurosurgeon performed surgery on Michelle when she was 3 days old to place a shunt to allow the CSF to flow normally. He came out with “good” news after the surgery. The cause of Michelle’s hydrocephalus was a one-time “event”, a hemorrhage in her brain. Michelle had suffered a stroke sometime between 20 and 29 weeks gestation, but to this day, we still do not know what caused Michelle to have a hemorrhagic stroke before she was born.

We were one of the fortunate ones to get Michelle’s diagnosis of stroke so early. A lot of babies’ strokes aren’t detected until months or even years after they suffer a stroke, because there is a lack of awareness that 1 in 4,000 babies can suffer strokes. Michelle was able to start treatment very early, while her brain was still forming pathways. Her official medical diagnosis is right hemiplegia, which is a form of cerebral palsy. Hemiplegia is the most common form of cerebral palsy in children born at term, and stroke is the number one cause.

Michelle has been involved with the AHA since early 2006 with a main objective of creating awareness for pediatric stroke. She wants to help other kids who are fellow stroke survivors, as well as get more research so other kids don't have to go through what she has gone through. She has had Botox in her right leg (not for wrinkles though), 2 surgeries, wears an AFO (ankle foot orthotic) on her right leg, has gone to weekly PT and OT since she was 6 months old and will live her entire life as a stroke survivor. She will never regain full use of her right side because a left portion of her brain stopped developing when her stroke occurred. But Michelle is not "disabled" she is "differently-abled" and would like to make sure that kids like her understand that they should never give up hope.

Michelle’s involvement with the American Heart Association has included: attending Lobby Day for the past 2 years; participating in 2 Heart Walks, one in Chicago, IL, one in Augusta, GA; speaker at the Heart Walk kick-off, Chicago, 2006; radio DJ promoting Heart Walk, 2006; speaker at National Survivor Luncheon, 2007; providing help with a Girl Scout Disability Awareness Day (the AHA had a booth); one of the "12 Faces of Cardiovascular Disease"; attending 2 "Strike Out Stroke" days with a semi-pro Chicago baseball team; wrote a story about her life at age 8 and it was featured on the AHA's website; has been featured in numerous newspapers, magazines and online articles about pediatric stroke; is the 2009 Stroke Hero for Augusta, GA; and was just selected as the 2009 National Youth Advocate of the Year.

Stay tuned for more You're the Cure on the Hill advocate profiles next week...

No comments: