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Katie Krisko-Hagel Eagan, MN

I am a registered nurse.  My Ph.D. is in nursing with a specific focus on heart disease, especially in women. My stroke story is about my mother who died from stroke and heart disease six years ago.

 
It was 1995 when she presented to an emergency room after having experienced dizziness, weakness, and loss of consciousness. She had a known history of high blood pressure yet she was admitted for an inner ear disorder. I was told later by the nurse that she was alert and oriented as evidenced by her ability to answer questions about where she lived, living relatives (who, in fact, were no longer alive), etc. Yet, nobody bothered to check to see if her answers were correct; because they weren't. My mother's memory was quite impaired and by this time, the window of opportunity had passed and brain damage had occurred. Her life was never the same since then. She lost her ability to live independently (she was only in her mid-seventies at the time) and eventually needed to live out her final years in a nursing home as she continued to suffer more strokes. Since 1995, much has improved about how people are assessed in an emergency room and treated by receiving tPA once ischemic stroke has been identified. Many brains have been saved; many lives have been uninterrupted and spared. Also, since 1995, a lot has been done about the prevention of stroke. This has all come about because of research. But, the battle isn't over because many people still suffer and die from stroke and heart disease every year. In fact, heart disease is still the number one killer of men and women in the United States. Research needs to continue in order to change these statistics. Without research, many lives like my mother’s will continue to be cut short or so drastically altered that they will never be the same again. Prevention and adequate treatment is key and can mean the difference between life (as well as quality of life) and death. Only through research can we have any hope to change the statistics. Only by continuing to fund that research, we can make it happen.

Mary Kay Ballasiotes, Mid-Atlantic Affiliate

Mary Kay Ballasiotes has been advocating for children for over 15 years.  Her daughter, Michelle had a stroke before she was born and that moment changed both of their lives forever. Mary Kay’s advocacy days started in 2002 in Chicago where she founded the Childhood Stroke & Hemiplegia Connections of Illinois, simply because there was a need for it.  Before long, Mary Kay and her daughter were fixtures at Lobby Day.  At National Lobby Day, May 2006, Mary Kay spoke with the Vice President of the American Stroke Association (ASA) and told him about her daughter having a stroke before birth.  She learned that the VP had never heard of pediatric stroke. From that day on Mary Kay made it her mission to collaborate with the American Heart Association (AHA) and the ASA about pediatric stroke, and to raise awareness about it.

Over the years, Mary Kay and Michelle attended heart walks, lobby days, and were very vocal about pediatric stroke in each state they have lived in: Illinois, Georgia, and now North Carolina. Most recently, Mary Kay co-produced a pediatric stroke awareness video with the American Heart Association/American Stroke Association.  The video was created to raise awareness that strokes can happen in babies, children and even before birth. Join us here  to watch this impactful video.   

Making a difference in people’s lives is the most rewarding element of being part of advocacy.  Mary Kay and Michelle have attended many lobby days over the years, both national and state.  The experience never gets old to Mary Kay.  She loves seeing how her passion and effort can make a difference, and strongly feels that one person can make a difference!  In August 2010, Mary Kay and her family moved to North Carolina where she soon started working with Betsy Vetter, the AHA Director of Government Relations in the Mid-Atlantic Affiliate.  Mary Kay readily admits her love of working with Betsy.  She is one of the reasons Mary Kay is still volunteering and advocating with AHA.  Mary Kay feeds off Betsy’s passion and enthusiasm and feels that Betsy has a gift for working with volunteers and government officials.

Mary Kay is very proud of her daughter Michelle and the hard work that she has been doing right alongside her mother. While back in Chicago in 2007, Michelle was chosen to be one of the 12 “Faces of Cardiovascular Disease.”  Her image was captured on one of many large posters that were circulated around the United States for Heart Walks.  These posters are still being used today.  Because of Mary Kay and Michelle’s hard work, they were both featured in an ABC news article once again shedding light on pediatric stroke. In 2009, Michelle was honored with the Stroke Hero of the Year and received the National Youth Advocate of the Year award.

Mary Kay’s calling is to advocate for children. She feels that things happen for a reason. The stroke that Michelle suffered enabled both Michelle and Mary Kay to reach other families and make a difference in their lives and in the area of pediatric stroke.  Mary Kay does not have much free time, but when she does, she enjoys going out to lunch with friends and reading. 

One great memory Mary Kay has included that of her son, Alex.  While driving back from picking Alex up at college, he remarked how much he admires the work that she has done over the years.  The example that Mary Kay has provided has empowered him to pay it forward by getting involved in politics and leadership roles.   May Kay continues to advocate for children and wants everyone to know that one person can make a difference.

 

 

 Advocate interview provided by Blog Contributor Amanda Orfitelli.

My name is Ryley Williams.  I am a high school student and stroke survivor.  This is my story. 

On July 8, 2013 my life was forever changed when I collapsed during warm up exercises at sophomore football practice. I was rushed to the ER, and they quickly told my parents that I needed a higher level of care, so I was taken in a helicopter to Arkansas Children's Hospital in Little Rock. In less than 4 hours of being admitted my parents were told that I had suffered multiple strokes in the left side of my brain. I could not speak or move the right side of my body. But they still did not know what caused the strokes. I was 15 years old, and in the best shape of my life. How could this happen to me?! 

Less than 48 hours later I was taken into emergency surgery to remove a portion of my skull to relieve the terrible swelling from the strokes. I am told this saved my life. Immediately following the crainectomy, a transesophageal echocardiogram was performed and it was then that the vegetation like strands that had built up from an unknown (and never identified) bacterial infection were found, and I was officially diagnosed with negative culture endocarditis.

I was immediately started on several different strong antibiotics to fight the infection, so the next 6 weeks I had to carry around an IV for these medications.  I am told that I completely broke all expectations and predictions from the stroke damage and was moved out of PICU directly into the rehabilitation unit at Arkansas Children's Hospital. 

I was still getting my food through a feeding tube in my nose, and couldn’t sit up or move on my own. There was speculation that I might only get part of my right side working again. 

But gradually and in leaps, I started fighting to get my life back, beginning with talking, swallowing, moving my arm and leg, and eventually sitting up and standing. After almost 3 weeks in rehab, I took my first steps with the help of a walking machine, and several physical therapists. The next move was a transfer to a residential rehabilitation hospital closer to home, and I immediately started physical, occupational and speech therapy on a daily routine. After another 3 weeks, I was able to come home.

Altogether the total amount of time spent in the hospitals was 7.5 weeks. It was during this time that my neurosurgeon broke it to me that I would never play football again, or any other contact sport. This was devastating to me. In November of 2013, I went back to ACH for my final surgery that replaced the missing piece of skull with a prosthetic piece.

Once again I fought against the odds, and went home after only 2 days, and never lost any of my progress. In January, I went back to school with a shortened schedule, and daily PT/OT/Speech therapies, as well as trying out my new role as a student athletic trainer.

It has been a year since my stroke, and it’s been a very tough journey, not just physically, but mentally hard to accept my new limitations and lifestyle. I want to tell other stroke survivors to not give up, even a tiny progress is progress, and it’s further than you were a week ago.

A lot of people think I have it easy, but it’s really hard to see all my friends moving on in their lives, and I am just fighting to run again, or ride a bike, or play video games. It will all happen again…..just not as quickly as I wish, and that is okay. I have also had my 16th birthday since the strokes, but I will not be able to drive for another year or so, because I have had seizures that are “normal”, but should be controlled by medications I take daily. No matter what, I am alive and I am thankful that I am still on the earth to help others that have been through what I have been through.

crafted by Janice Edwards-Jackson, Arizona

I am 34 years old and a stay-at-home mom of 3 children, ages 8, 6, and 3.  On September 21, 2013, I had just returned home after taking my 2 older children to piano lessons.  We were eating lunch when I stood up to warm up my food in the microwave.  The room started spinning.  I thought I was about to have a migraine, since I get them every so often, so I grabbed the counter and made my way back to my seat.  I became sleepy and the spinning would not stop. I told my husband that something was wrong and that I wanted to go to sleep so he helped walk me to the couch and gave me 2 aspirin.  I slept for 3 hours.

2 days later, I went to the doctor and was told it was vertigo/inner ear, but the next day something still didn’t feel right, so I went to the ER at a hospital near my house.  They did a CT scan and MRI and told me I had a brain tumor.  I was terrified.  I was transferred to Barrows Neurological Institute, to confirm the test results, but I was then told that I had a small thalamic stroke.  Learn to spot a stroke FAST by clicking here.

It turns out that my stroke was caused by a congenital heart defect known as PFO (atrial septic defect/hole in the heart). Until this incident, I never knew I had a congenital heart defect (CHD) and a bi-cusped aortic valve.  I went to both physical and cognitive therapy and I currently take 325 mg of aspirin daily. 

Additionally, I had all of my children checked and I found out that my youngest daughter has a PFO as well and that one of her coronary arteries is not completely on the correct side.  The doctor hopes that as her heart grows, that the PFO will close and that the coronary artery will completely move to the correct side.  We are hoping that this will happen by the time she is 5.  If not, she will have to have surgery.

Unfortunately, congenital heart defects are the number one birth defect in newborns.  There are an estimated 500 babies born in Arizona each year with congenital heart defects and of those 125 babies will have a critical congenital heart defect.  Critical congenital heart defects are heart defects that often require major corrective procedures in the first year of an infant’s life.  Thankfully, House Bill 2491 was signed into law by Governor Brewer and now all newborns in Arizona will be screened for CHDs via pulse oximetry screening prior to leaving the hospital.  HB 2491 will save many lives in the future by catching heart defects at the earliest point in life allowing for early detection and treatment.  Visit here for more information.

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