Life’s Unexpected Turns
-by Mary Kay Ballasiotes
One of the things I have learned over the years is that you can never predict with certainty what bumps, twists and turns life will hand you. Some will be life changing, some will be minor nuisances, but what you do with them is up to you. What I do know is that along these unexpected journeys, you will meet some incredible people that will change your life forever.
For me, this way of thinking started when I had children. Suddenly, nothing was certain. Our first child had a life threatening peanut allergy, and 21 years ago, that was still rare. Then when I was pregnant with our third child, Michelle, I really understood there was just no way to be prepared for what life hands you. After 29 weeks of a healthy pregnancy, we were told that our unborn baby had a brain abnormality. This was extremely difficult news to hear and we were faced with uncertainty about what lay ahead for our daughter. It turned out that Michelle had suffered a hemorrhagic stroke somewhere between her 20th and 29th week of gestation. Luckily, we lived in the Chicago area and had a great team of doctors (a huge thank you to my perinatologist, Dr. James Keller and Michelle’s neurosurgeon, Dr. John Ruge). Michelle was diagnosed with hydrocephalus at birth (a build-up of cerebral spinal fluid in the brain) and her surgery at 3 days old to place a shunt in her brain revealed evidence of the old hemorrhage. She was followed by a wonderful team doctors and nurses in the NICU follow-up clinic at Advocate Lutheran General in Park Ridge. She was diagnosed with right hemiplegia (a form of cerebral palsy) at 3 months of age, so she was able to start physical and occupational therapy right away.
|Mary Kay Ballasiotes and daughter Michelle|
Taking care of a child who had suffered a stroke became a full time job. Between doctor visits and weekly therapy visits, fighting with insurance companies, and trying to keep some normalcy for our other two children, it was a juggling act. I knew I couldn’t be the only one trying to figure out the path to take, although I have to tell you I hadn’t met many other parents of young stroke survivors, at least not yet. Michelle was about 4 years old when I finally decided to search for other parents in similar situations. I was able to find an online group and from there I used that list-serve, along with the connections I had with all of Michelle’s doctors and therapists to create a support and information group for families in the greater Chicago area.
Childhood Stroke & Hemiplegia Connections of Illinois (CSHC) was created back in 2002 and I met some incredible families through this group. Hopefully the meetings and family events helped everyone realize that we were in this together.
I can’t remember the turn of events that led me to the American Heart Association, but somehow, in 2005, Mark Peysakhovich, (Sr. Director of Government Relations for the AHA) and Sara McElmurry, (Director of Communications for the AHA at the time) got in touch with me about my group. They wanted to talk to me about this new group, SSEEO and thought I should come to a meeting to see if it was something I was interested in. Well, the last thing I needed was another volunteer position, but I went anyway. This was one of those times I mentioned where you meet incredible people along life’s journey. Mickey Clancy (president and founder of SSEEO) was running the meeting and her enthusiasm was contagious. She, as well as the others from the AHA, were amazed when I told them that babies and children suffered strokes. After vowing before the meeting not to get involved in any more groups, I left that day in charge of a SSEEO booth at a Girl Scout Disability Awareness Day! I continued running CSHC, became a board member for SSEEO and became an active volunteer for the AHA. By now, Michelle was 8 years old, and was not shy about public speaking. She also started volunteering with the AHA and SSEEO. We were honored to be able to tell her story at the Chicago area Heart Walk kickoff in 2006, attend National Lobby Day with the Illinois AHA in 2006, 2007 and 2008, speak at the National Survivor’s luncheon in 2007 and give many interviews for magazines and newspapers in the area. Michelle even got to be a guest DJ for a local Chicago radio station in 2006 and was able to not only promote the Heart Walk, but to raise awareness about pediatric stroke.
Sadly, in 2008 our family moved to Georgia. It became difficult to run CSHC and participate in SSEEO activities from a different state. Mickey tried to make it easy for me to stay on the board, but it just didn’t work out. However, I am still connected to SSEEO by editing their website and newsletter content. Michelle and I were able to continue as volunteers with the AHA, attending Lobby Day in 2009 with the Georgia constituents. 2009 was also the year Michelle received the “National Youth Advocate of the Year” award from the AHA. I was able to form a team of pediatric stroke survivors for the Augusta, GA Heart Walk in both 2008 and 2009. Michelle was the Augusta “Stroke Hero” for 2009 and spoke at the Augusta Heart Ball. She also was one of 3 guest speakers invited to present at a Congressional Briefing on pediatric stroke in the spring of 2010. Very exciting events for a young stroke survivor!
In August of 2010 we moved to North Carolina but luckily we were able to stay connected with the AHA. We have a wonderful Director of Government Relations here in NC, Betsy Vetter, who has allowed us to carry on with our mission of raising awareness of pediatric stroke with the AHA, government officials and the community. Michelle and I attended National Lobby Day in 2011 with our NC constituents and were excited to meet up with our friends from Illinois and Georgia! We attended the NC State Lobby Day in 2011 and hope to attend again this year.
Even with all of our efforts with the AHA, CSHC and SSEEO, I just felt that there
was more that could be done. As I said, these twists and turns have allowed me
to meet many fabulous people along this journey that have given me the opportunity
to speak out on behalf of these very young stroke survivors. One was Dr. Bernard
Maria, a pediatric neurologist in Augusta, GA. He allowed Michelle and me to
do a presentation at a pediatrician’s conference in Kiawah Island, as well as
at Grand Rounds at the Medical College of Georgia. Then recently, I had the pleasure
of meeting Amy Edmunds, founder of Young Stroke, an organization focused on
advocating for stroke survivors between the ages of 20 and 64. Amy asked me to
do a presentation
about pediatric stroke at a Young Stroke Symposium at a hospital just south of
Myrtle Beach, SC. This was an incredible opportunity to educate a medical community
about a subject they knew nothing about. Since SSEEO has been trying to include
the young adult population in their activities, Mickey was able to come visit me in NC and attended the SC symposium with
me! It was a great collaboration.
In the meantime, I have been serving on the
Data Safety Monitoring Board for a clinical trial, funded by the NIH. This study
will be testing the safety and effectiveness of using tPA (a clot busting drug
used on adult stroke survivors) in children. This is one of the few research
studies being done in the pediatric population. Most recently, I was selected
to be a stakeholder reviewer for PCORI, (Patient-Centered Outcome Research Institute)
an organization authorized by Congress to conduct research in order to give patients
a better understanding of the prevention, treatment and care options available,
and the science that supports those options.
Last but not least, is a non-profit organization that I recently co-founded with
a pediatric neurologist from Canada, a pediatric neurologist from California,
a parent advocate from St. Louis and another parent advocate from Canada. Together
we have created an international umbrella organization so we can have a more effective and
powerful voice in order to advocate for these young stroke survivors. Our long
term goal will be to provide a yearly young investigator’s award for innovative
research for pediatric stroke. Look for the International Alliance for Pediatric
Stroke to be launched sometime in March of 2013. www.iapediatricstroke.org
of these paths were something I planned for. In fact, years ago, before children,
if you had told me I would be speaking to large groups of people, advocating
on behalf of children, working with world renowned neurologists and making international
connections, I would have said you must have me mistaken for someone else. None
of this was in my comfort zone, nor was it a path I chose in college. But these
past few years have been the most rewarding, humbling and gratifying years of
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Mary Kay Ballasiotes