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How fate brought together three stroke survivors' families

The following article about You're the Cure advocate Ryley Williams and two other youths who survived strokes on the same day was published by AHA CEO Nancy Brown in the Huffington Post on July 6th, 2016. A link is provided at the end of the story.

In the community of Dartmouth in the Canadian province Nova Scotia, Nik Latter’s family is throwing what his mom promises will be “a big ol’ party.” Fist bumps and hugs will celebrate the fact he’s made it an entire year since his devastating July 8th.

One by one, over each of the last three July 8s, Ryley, Amber and Nik suffered a stroke. Yet the oddity of their shared date is only part of what led their moms to create a de facto support group.

What really brought them together is that Ryley, Amber and Nik were — and still are — teenagers.

Ryley was 15 and devoted to becoming the starting nose guard on his varsity football team. Amber was 13 and loved playing softball and hanging out with the two girls who’d been her best friends since kindergarten. Nik was a few days shy of 18 and had left school to work at a restaurant; he’d bought a car and aimed to become a voluntary firefighter following that upcoming birthday.

Now, well, their dreams are different.

As we approach July 8, the families allowed me to share their stories to send an important message: Stroke can attack anyone at any time.

***

Ryley Williams went into the summer following his freshman year at Bentonville (Arkansas) High with one goal. He wanted to draw the attention of the varsity football coaches.

So he ran and lifted weights. He ate six meals a day, devouring only foods that would expand his 6-foot, 242-pound frame the right way.

“Honey, you’re never late, you make good grades, you don’t cause any problems — trust me, the coaches notice you,” his mom, Terri Rose, told him. “They just won’t tell you they notice you.”

The morning of Monday, July 8, 2013, Ryley went to an indoor field for football practice. He was stretching when he grabbed his leg and collapsed. Everyone thought he’d pulled a muscle and overreacted. Then they realized there was more to it.

At the hospital, a brain scan showed a bigger problem than the facility could handle. He was flown by helicopter to Arkansas Children’s Hospital in Little Rock. It wasn’t easy fitting someone his size into the chopper.

When they landed, seizures began. Off he went for an MRI. Looking at the results, the doctor pointed to five spots.

“This is a stroke, this is a stroke, this is a stroke, this is a stroke and this is a stroke,” the doctor said. “We need to find out why he has so many blood clots in his brain.”

Around 3 a.m. Wednesday, they still didn’t know why. And now they had a new problem. Ryley’s brain was swelling.

He underwent an operation to remove part of his skull. With Ryley sedated, doctors also took a closer look at his heart. They found hair-like strands of a bacterial infection on the outside of two valves. A-ha! This was the source.

Next question: How much brain damage had he suffered? His right side didn’t function. Doctors cautioned he may never walk or talk.

As Ryley was coming out of his medically induced coma, some football players visited. Coaches, too. They brought a varsity jersey with his number, 99.

“The head coach drove down to Little Rock and stayed with us when Ryley had the skull surgery,” Terri said. “Other coaches came to visit, too. They told us they were watching him. They knew he was going to have a big year. Hearing that was bittersweet.”

Fast forward to today.

His right arm remains compromised. He also battles aphasia, a condition that sometimes makes it hard for him to get words out. Still, Ryley recently graduated high school, right on time. He even spent the last year working at a Walmart Neighborhood Market. And he’s become an advocate for the American Stroke Association. Last year, he and Terri encouraged a Congressional subcommittee in Washington, D.C., to support more funding for research and awareness about pediatric stroke.

He’s spending this summer at a facility that specializes in neuropsychology recovery for victims of strokes and traumatic brain injuries. He’s learning skills to live on his own, although he plans to spend two years at home while attending Northwest Arkansas Community College.

“He’s incredibly positive,” Terri said. “He’s accepted everything. He tells you, `This is who I am now.’”

***

The night of July 8, 2014, Amber Hebert was on first base when the next batter hit the ball to the outfield.

Amber ran to second base without anyone trying to get her out, then fell as if she’d been punched. She vomited and went into a seizure. Her 5-foot-3, 86-pound body thrashed so violently that four firefighters held her down while a fifth injected her with medicine.

The local hospital in Bellevue, Nebraska, ended up sending her to Children’s Hospital & Medical Center in Omaha. The seizures continued until 3 a.m.

“When she finally stopped seizing, she was able to see and talk and understand you,” said her mom, Tirzah Hebert. “But I could see the fear in her eyes.”

Tests — and seizures — continued throughout the next day. Finally, doctors declared she’d suffered a stroke.

The next day, Amber sat in a chair holding a cup and walked around her hospital floor. The following day, she had a bit more difficulty holding a cup but could still walk. That night, Tirzah asked if she understood what had happened.

“I don’t know,” Amber said.

The next day, a Saturday, Amber couldn’t walk, talk or hold up her head. This continued until Tuesday, when she finally underwent an MRI. It showed that her brain was swelling.

Doctors were able to reduce it with medicine. Then came the waiting game to determine the extent of brain damage. Soon, she began smiling and communicating with her left hand — fist for yes, open palm for no.

These days, Amber walks, but sometimes the toes on her right foot curl, causing her to drag her foot.

She can’t move her right hand or wrist. She also has aphasia. Therapists believe that with practice she’ll improve in every area. (Doctors never determined the cause of her stroke.)

Alas, there have been other obstacles.

Shortly after Amber made it home, her dad’s dad — with whom she was very close — died of cancer. Four months later, a lump in her dad’s neck was found to be cancerous. Early detection plus chemotherapy and radiation helped him beat it.

School proved no refuge. She went from being one of the most popular girls at school to getting bullied. Her two lifelong best friends “just disappeared,” Tirzah said. Amber switched to homeschooling until giving the classroom another try this summer.

“She’s a happy girl, for the most part, very loving and caring,” Tirzah said. “She still has some depression, but who wouldn’t? To have your life completely turned upside down like hers has?”

***

Even as a child, Nik Latter struggled with migraines. So, last June, when he had one that was bad enough to go to a hospital, nobody thought much of it.

Nor did anyone think twice when he left work complaining of a migraine on Sunday, July 5, 2015.

The next day, he endured what he described as the worst migraine he’d ever experienced. He wore sunglasses indoors and had his mom, Rhonda, drive him to a clinic. The next day, he slept at his grandparents’ house because it was quieter than being home with his two younger sisters.

Rhonda visited him Wednesday, he stared blankly. He tried talking, but nothing came out.

“He’s having a stroke,” she declared. “Call 911!”

A scan showed a mass on the right side of his brain. During an operation, doctors determined it was a stroke. Days later, it was determined the cause was a sinus infection gone severely wrong. The infection broke the barrier between the sinus and the brain, releasing a blood clot.

Nik’s recovery started great. He gave hugs, pulled his mom’s hair and played thumb wars with his sisters. Then, in the early hours of July 16, he had another stroke. On the other side of his brain.

Doctors said Nik may not survive. But the family wanted to give him every chance. Their faith was rewarded when he was weaned off the breathing tube.

He continued clearing hurdles, although he remained hospitalized until March. The long struggle seemed to deflate him; being home reinvigorated him. He now puts his right foot down and pushes his wheelchair. He fist bumps with his right hand, laughs, smiles and kicks.

He makes sounds and, sometimes, says words. Not enough to say he’s talking. But he’s trying.

“He’s very aware of his surroundings,” Rhonda said.

***

While each stroke story is different, every stroke shares similarities.

Time lost is brain lost. The sooner the stroke can be recognized, the sooner treatment can begin. The gold standard of treatment is called tPA. If this clot-busting drug is administered within three hours, and up to 4.5 hours in some cases, the extent of recovery can improve drastically.

That’s why the American Stroke Association urges everyone to remember the acronym FAST. When you see Face drooping, Arm weakness or Speech difficulty, it’s Time to call 911.

Stroke is the No. 2 killer worldwide and No. 5 in the United States. While it’s true that strokes usually happen to older people is true, Ryley, Amber and Nik are proof that’s not always the case.

The world of pediatric stroke is small enough — and the pull of the internet is strong enough — that families of survivors are bound to find each other.

For instance, Terri connected with Lea Chaulk, a Canadian mom whose son was about the same age as Ryley and had a stroke about the same time. Terri and Lea became like sisters as they helped their sons grieve over the lives they lost and learn to embrace their new reality. Lea later introduced Terri to Rhonda.

Meanwhile, Ryley got to know four teenagers from the Kansas City area who were featured by American Heart Association News after they overcame strokes during high school to graduate on time. One of those families had gotten to know the Heberts, and they connected Terri and Tirzah.

The three moms — Terri, Tirzah and Rhonda — lean on each other often. They’ve yet to meet in person, although Ryley and Amber have shared messages via Facebook.

“Knowing that I’m not alone has helped soooo much,” Tirzah said.

“If I didn’t have some of these moms, I think I’d go insane,” said Rhonda, laughing. “Sometimes I sit down and get lost in thought and get upset. Then I’ll send one of them a message saying `I need you to bring me back down to Earth.’”

Three families irrevocably altered, all on a July 8. It’s incredible. Yet from this coincidence comes strength.

“I’ve told my family, `Look, it happened to two other kids on the same day,’” Tirzah said. “It’s like, Wow. And we’ve all made it this far. And you know what? We’re going to keep on going.”

Read the rest of the story on the Huffington Post.

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Advocacy Volunteers Needed for Upcoming Wisconsin Heart Walks

Heart Walk season is upon us once again!  The Advocacy Department is looking for 2-3 volunteers for each of the upcoming Heart Walk events (see below). We will need help throughout the day collecting petition cards and recruiting new advocates for the You’re the Cure network.

If you are interested in volunteering for one of the Heart Walks listed below, please email Jason Harder at jason.harder@heart.org with your full name and cell phone number. Please make sure to include the event title in your email.  We'll follow up with you soon! 

Date Event
8/28/16 Janesville Heart Walk
9/17/16 Green Bay Heart Walk
9/17/16 Fox Cities Heart Walk
9/18/16 Milwaukee Heart Walk
9/24/16 Madison Heart Walk
9/24/16 Eau Claire Heart Walk
10/15/16 Racine/Kenosha Heart Walk

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Find the Heart Walk Near You

The Heart Walk is the American Heart Association’s premier community event, helping to save lives from heart disease and stroke. More than 300 walks across America raise funds to support valuable health research, education and advocacy programs of the American Heart Association in every state. Our You’re the Cure advocacy movement – and our public policy successes along the way – are all made possible by the funds raised by the Heart Walk. Whether it’s CPR laws passed to train the next generation of lifesavers or policy to regulate tobacco products and prevent youth smoking,  together we are building a world free of cardiovascular diseases and stroke. The Heart Walk is truly a community event, celebrating survivors, living healthy, and being physically active. We hope you’ll join us and visit the site today. If there is not a walk listed in your area soon,  it may be coming in the spring season or you can join a virtual event. And don’t forget to connect with your local advocacy staff and ask about your local Heart Walk day-of You’re the Cure plans - they may need your help spreading the word. Thanks for all you do, and happy Heart Walk season.

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Study: Increasing number of U.S. adults living with congenital heart defects

According to new research in the American Heart Association’s journal Circulation, more adults are living with congenital heart defects in the United States, creating the need for more health services and tracking systems to collect data across all ages, not just at birth. 


A new study estimates that about 2.4 million people – 1.4 million adults and 1 million children – were living with these medical conditions in the United States in the year 2010.  Nearly 300,000 of them had severe heart defects.  Compared with the estimates for the year 2000, these figures represent a 40 percent increase in the total number of people living with congenital heart defects in the United States and a 63 percent increase among adults. 

Click here to read more!

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Help Protect PE for Kids Like Me!

Guest post from Reagan Spomer, 6th grader Alliance for a Healthier Generation Youth Advisory Board Member & You’re the Cure Advocate

I have two words for you… scooter hockey.  Sounds fun, doesn’t it?  That’s because it is!  Scooter hockey, along with cage ball and 3-way soccer are some of my favorite activities in gym class, which I have a few times a week.

I’m glad I have physical education for a number of reasons.  It keeps me active and teaches me to try new things.  It helps me focus on my school work.  It relieves my stress.  And most of all, it makes me feel great! 

But I know a lot of schools don’t have regular PE like my schools does.  That means a lot of kids are missing out on the benefits of being active during the school day.  I think this needs to change.   

Will you help?  As part of the nationwide campaign to protect PE in schools, Voices for Healthy Kids has created a photo petition map to show how many people across the country love PE like I do.  As people share their pictures, the map will change colors.  I’ve added my “I heart PE” photo for South Dakota.  Will you do the same for your state?  It’s really easy:

  1. Print an “I heart PE” sign (or make your own!)
  2. Take a picture of yourself holding the sign.
  3. Click on your state to share your photo.

Thanks for helping to protect PE for kids like me!
-Reagan

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CPR in Schools Grant Announced

Great news from Green Bay!  Cooperative Educational Service Agency #7 (CESA 7) is pleased to announce that they have received a grant from the Medical College of Wisconsin’s Advancing a Healthier Wisconsin Endowment to help schools statewide implement robust CPR training programs for students. The 2 year, $491,269 grant will work with educators from schools across the state to implement a CPR program, provide schools with manikins and other training materials, and connect schools with local community resources.

CESA7 will lead this project, in coordination with the American Heart Association and Medical College of Wisconsin. They have also partnered with the Office of Rural Health, WI Emergency Medical Services Association, WI Fire Chiefs Association, Professional Firefighters of WI, WI Professional Police Association, Project ADAM WI, Marshfield Clinic, Northern Highland Area Health Education Center, WI Association of School Nurses, and the WI Medical Society. Additional partners continue to be recruited.

"It is a pleasure to partner on this project," said Nicole Hudzinski with the American Heart Association. "The first few minutes of a cardiac arrest can mean the difference between life and death. In order to increase survival, we need to increase the number of laypeople trained to perform CPR. This project will do just that."

This program will ensure that at a minimum, 350 schools implement annual high-quality CPR education with state-of-the-art training materials, hands-on practice, and community involvement. Ultimately the tools and best practices will be shared with all schools in Wisconsin, creating an army of students who are ready and willing to act in the face of a cardiac emergency.

To learn more about the project, visit us on Facebook at https://www.facebook.com/cprinwischools

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Will you help influence scientific research?

We need to hear from consumers like you as the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) partner together on the future of research. Your experience could lead to the next research study to improve heart disease and stroke treatment.

As an advocate we’ve asked you to speak out for increased funding for medical research and you’ve answered by contacting lawmakers and sharing your personal stories as survivors, caregivers, and loved ones touched by heart and stroke disease. Now we invite you to share your experience, the decisions made in determining your or your loved one’s treatment plans and the factors that influenced those decisions. If we better understand your experience it can help guide the research that will lead to better care tailored to the specific needs of patients.

If you’ve had a heart attack, suffered a stroke, or you know a loved one who has, your unique understanding could help guide research to solve un-met care challenges faced by individuals like you and improve heart and stroke treatment.

Here are the details:

  • We are focused on un-met challenges faced by patients and caregivers like you. 
  • To join this challenge, you’ll be asked to provide a written submission of your first-hand experience after a heart disease or stroke event.
  • The story and description of the concerns you faced and the decisions you made should be personal and not a general case.
  • A team of scientific professionals and patient representatives with expertise in heart disease and stroke will review your story. Learning more about issues and concerns important to your decision-making can help them improve experiences and outcomes for patients in the future.
  • If your submission is chosen, you could win $1,000 and possibly help shape the future of cardiovascular research.
  • All submissions must be received by June 8, 2016.

Please take this important challenge and share your insights. Your story matters. Take the challenge today!

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CPR in Schools - it's official!

On Tuesday, April 26th, Governor Scott Walker signed Wisconsin’s CPR in Schools legislation into law, making Wisconsin the 31st state to ensure all students learn compressions-only CPR.

The American Heart Association’s CPR in Schools campaign began in earnest in August of 2015 when key AHA advocates and board members started to meet in-district with their legislators. Our grassroots efforts continued into the fall with a successful lobby day, bringing 120 people from every corner of the state in Madison to lobby legislators. During this time we also built a significant stakeholder coalition and released a promotional video starring three CPR-trained teenagers and the heart attack victim they helped save. 

In December our media advocacy efforts increased, resulting in significant print, radio and TV coverage. In early January we had public hearings in both the Senate and the Assembly, and AHA Board members joined advocates and experts from around the state in testifying. Full floor votes were soon after, with the Assembly passing the CPR in Schools bill on February 9th and the Senate following suite one week later.

Wisconsin’s CPR in Schools law takes effect in the 2017-2018 school year and will add over 58,000 CPR trained youth to local communities each year, thus bringing the total number of students trained every year to 1.8 million in all 31 states.

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AHA President Says: The Science is Clear on Sodium Reduction

Check this out! In a new video, the President of the AHA, Dr. Mark Creager, explains that the science behind sodium reduction is clear. He says that robust evidence has linked excess sodium intake with high blood pressure, which increases the risk of heart attack, stroke, and heart failure. And, he points out that you can do something about it: join AHA’s efforts to demand change in the amounts of sodium in our food supply.

“Nearly 80 percent of the sodium we eat comes from processed, prepackaged, and restaurant foods” says AHA president Dr. Mark Creager. The video shows the 6 foods that contribute the most salt to the American diet: breads & rolls, cold cuts and cured meats, pizza, poultry, soup, and sandwiches."

To see the video, head over to our Sodium Breakup blog!

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CDC releases new study about school lunches

The Center for Disease Control and Prevention (CDC) has released a new study entitled, “Improvements and Disparities in Types of Foods and Milk Beverages Offered in Elementary School Lunches, 2006–2007 to 2013–2014,” by Lindsey Turner, Punam Ohri-Vachaspati, Lisa Powell and Frank J. Chaloupka. 

In this study, researchers analyzed survey responses from 4,630 public elementary schools participating in the National School Lunch Program. The survey evaluated disparities and changes in school lunch characteristics from 2006-2007 to 2013-2014. A report evaluating the changes in school lunches was published last year by Bridging the Gap, a nationally recognized research program of the Robert Wood Johnson Foundation. This latest paper evaluates the disparities findings of the research.

Check out the rest of the story on PreventObesity.net

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