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My Story

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.

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2 Days Left and So Much to Do!

With only two days left before the legislators break for the summer we need a last push to get some critical legislations to help our kids passed. The House still needs to take action on legislation that would require all coaches to know CPR, restricting the sale and use of E-Cigarettes, and requiring healthy vending in State Buildings and the Senate has a chance to pass legislation that would provide quality physical education in our schools. We also have a chance to get some language in around setting up a stroke system of care and we are waiting for final approval on fresh food financing.

Your legislators are hearing from all advocates in these last few days, it is crucial that your voices is being heard too so if you have not already taken action please do so today! Send an email or call your legislators today and let them know that these issues are important to you! I  appreciate your help and your continued advocacy we only have a few days to pass some important legislative priorities, and I hope to be passing along some good news on Friday!

 

  

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Remembering the Heart of a Friend

Last week, NC said good-bye to freshman lawmaker, Representative Jim Fulghum (R-Wake).  He passed away on July 19th after a short battle with cancer, at the age of 70.  Representative Fulghum was a retired neurosurgeon and his medical experience was a true asset to the NC General Assembly. 

During his short time in the General Assembly, Representative Fulghum was a champion for health issues.  The first legislation that he sponsored was a top priority for the American Heart Association, HB 105: Require Pulse Oximetry Newborn Screening companion bill to SB 98, which was signed into law on May 8, 2013.   He was also the lead sponsor for HB 827: Designate Primary Stroke Centers companion bill to SB 456 which was also signed by the Governor on the same day as the pulse oximetry screening law.  In addition, Representative Fulghum worked closely with tobacco control advocates both in 2013 and 2014 to ensure that e-cigarette/vapor products legislation defined these new products as a tobacco product, ensuring that these products would be included in NC’s tobacco-free policies, especially in our schools.

The NC AHA Advocacy Coordinating Committee recognized Representative Jim Fulghum for his commitment to strong public health policies of importance to the AHA on December 14, 2013.  Committee member, Peg O’Connell presented him with the NC AHA’s Heart of a Friend Award.  We all were looking forward to continuing our work with Representative Fulghum for years to come. 

“I can hardly believe that he has left us,” said Betsy Vetter, Sr. Government Relations Director.  “Representative Fulghum quickly distinguished himself as a true leader in the legislature.  It was such a pleasure to work with him on issues.  He was very thoughtful and knowledgeable.  North Carolina will miss him greatly.”

The AHA extends our heartfelt sympathies to the Fulghum family.  We have lost a health-hero. 

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Many schools prepared for new federal lunch standards

Thousands of schools around the country have found new ways of providing “smart” snacks for students – well in advance of updated federal lunch standards that begin with the upcoming school year.

Schools across the country will be following updated Department of Agriculture rules governing snacks, drinks in vending machines, stores and à la carte lines. The guidelines — which begin for the 2014-2015 school year — limit the amount of calories, fat, and sugar, while encouraging whole grains, reduced fat, fruits and vegetables. For more on this story, CLICK HERE.  

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Why I Advocate for Heart

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.

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It's Back to School Time in PA: Time to Learn...CPR!

Great news! As part of our CPR in schools effort, we’ve reached a milestone: with 17 states now training high school students in CPR, more than one million students will graduate every year knowing this lifesaving skill. Let's make Pennsylvania number 18!

Hands-only CPR training takes 30 minutes or less--less time than it takes to watch a sitcom. And teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive.

Send your message today in support of training our students in CPR--and let's graduate a new generation of lifesavers!

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It's Back to School Time in WV: Time to Learn...CPR!

Great news! As part of our CPR in schools effort, we’ve reached a milestone: with 17 states now training high school students in CPR, more than one million students will graduate every year knowing this lifesaving skill. Let's make West Virginia number 18!

Hands-only CPR training takes 30 minutes or less--less time than it takes to watch a sitcom. And teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive.

Send your message today in support of training our students in CPR--and let's graduate a new generation of lifesavers!

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It's Back to School Time in DE: Time to Learn...CPR!

Great news! As part of our CPR in schools effort, we’ve reached a milestone: with 17 states now training high school students in CPR, more than one million students will graduate every year knowing this lifesaving skill. Let's make Delaware number 18!

Hands-only CPR training takes 30 minutes or less--less time than it takes to watch a sitcom. And teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive.

Visit www.becprsmart.org to learn how you can help graduate a new generation of lifesavers in Delaware!

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It's Back to School Time: Time to Learn...CPR!

Great news! As part of our CPR in schools effort, we’ve reached a milestone: with 17 states now training high school students in CPR, more than one million students will graduate every year knowing this lifesaving skill. Let's make Kentucky number 18!

Hands-only CPR training takes 30 minutes or less--less time than it takes to watch a sitcom. And teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive.

Send your message today in support of training our students in CPR--and let's graduate a new generation of lifesavers!

Read More

It's Back to School Time: Time to Learn...CPR!

Great news! As part of our CPR in schools effort, we’ve reached a milestone: with 17 states now training high school students in CPR, more than one million students will graduate every year knowing this lifesaving skill. Let's make Ohio number 18!

Hands-only CPR training takes 30 minutes or less--less time than it takes to watch a sitcom. And teaching students CPR could save thousands of lives by filling our community with lifesavers—those trained to give sudden cardiac arrest victims the immediate help they need to survive until EMTs arrive.

Send your message today in support of training our students in CPR--and let's graduate a new generation of lifesavers!

Read More

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