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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, AR. 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 was 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 thru 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.

I’m excited to share my personal journey of advocating for heart, which ultimately led to AED machines being placed at my workplace. It began in 1998 when my husband learned he had a heart murmur and kept tabs on it via an annual EKG. However things worsened and his bicuspid aortic valve was weakened causing aortic regurgitation (AVR) and endocarditis, a serious infection in his heart.

Life was fairly normal until February of 2013 when he thought he was run down by allergies, very common for anyone living in Central Texas. Unfortunately, it was his heart. 

On May 22nd of 2013 he had open-heart surgery where his aortic valve was replaced by bovine tissue. "Holy Cow" is said in our household daily! He is recovering well and feels better with each day. This event is the scariest thing we've ever been though in our lives.

This has led me to become a strong advocate for the American Heart Association. I joined the AHA’s Passion Committee to promote physical activity, research and awareness for leading healthier lives.

In February 2014, my mission was for all our work associates to be dressed in red for National Wear Red Day. Thanks to the support of my husband and many work colleagues, our office shined in red that day! We hosted a staff get-together where I shared our story and University of Texas Volleyball Coach Salima Rockwell shared her personal survivor story with our team.

This event lead to an engaged Q&A session where a colleague discussed how an AED machine could have saved the life of a dear friend. His question sparked a project in our team immediately.  From there we made it our mission to get AEDs placed in and around our office. 

I’m thrilled to report, AED machines are now placed in our workplace creating an environment to treat sudden cardiac arrest. My vision is to continue to make an impact and be viewed as an active, engaged contributor in the heart health community.

This is just a small example of how one person sharing their voice can lead to big change.  I hope you will join me in being an advocate for heart health at your workplace, school, community, or wherever there may be a need!

This post was written by AHA volunteer and Passion Committee member April Wade Peters.

Laura Gipe and Jacob Murray

When nurse Laura Gipe trained her grandson's Boy Scout troop in lifesaving CPR, she never imagined that, at just 15-years-old, he would use that skill to save her. Watch Laura and Jacob's touching story.

Like Laura's, 88% of sudden cardiac arrests occur at home. For every minute that passes without CPR and defibrillation, chances of survival decrease by 7-10 percent. Thankfully, Jacob had been trained how to perform CPR until help arrived. You might be surprised to learn that we can teach ALL our high school students CPR in just one class period.

Together, we can ensure that this generation of students becomes the next generation of life savers. Visit www.becprsmart.org today and raise your voice!

 

 

 

Sara Beckwith, District of Columbia

Why is advocacy work so important? To Sara Beckwith it is about passion, and because she “truly believes that we have a voice and it is imperative to use our voice to work on programs such as the Healthy Tots Act and the Workplace Wellness Act.” Sara has worked hard with You’re the Cure and the American Heart Association to be an advocate for heart healthy legislation because she has witnessed the benefits firsthand in the community.

Sara is also passionate about food. One of her favorite activities is trying different restaurants in the District with her husband and when she cooks she experiments with different recipes. Food is also an essential part of her career. She first became interested in improving heart health when she worked as a cardiopulmonary rehab dietician in North Carolina. This position allowed her to help patients recuperating from heart surgeries and teach them how to take care of their hearts by eating healthy.

For the last five years, Sara has worked as a dietician teaching low-income families in the District to make healthy choices. It is through these experiences that she has come to see the direct impacts of advocacy work on the health of families. She has worked hard to support the funding for tobacco cessation programs so that families in DC can receive the help that they need.

As a dietician, Sara has been able to council women about their high blood pressure and knows that many people do not understand the consequences of these health problems. These experiences have driven Sara’s passion to advocate for legislation that will impact the health of the community.

What Sara finds as the most satisfying about advocacy work is “being a part of the public policy process and having a voice” and to others out there sitting on the fence about advocating for healthier lives she would say “Never doubt the power of one voice, our personal stories, passion, and conviction have a tremendous impact on policy makers.”

 

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