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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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Healthy Vending Options in Tulsa!

Recently, members of the Oklahoma AHA Advocacy and ANCHOR Team traveled to Tulsa to meet with Mike Spencer, food vendor for the Tulsa County Jail.  In accordance with a federal law called the Randolph Shepard Act, blind vendors often staff most government facilities food services and vending machines.  Mike is helping to lead the blind vendor’s coalition under the Oklahoma Department of Rehabilitation Services, and is attempting to implement more healthy options for both inmates and staff at the jail.

Staff spent time at the jail examining his machines and commissary to see what changes he has made to improve healthy options and what further options were available.  Mike has been in the vending business for nearly 14 years in the Tulsa area, and introduced staff to other vendors at the Tulsa County Court building and the Tulsa location for state offices, both of which he has managed in the past.  Other vendors in the area are very interested in healthy options as well.  The AHA will be working with the blind vendors to provide trainings and resource materials that will aid with generating awareness and vested interest for implementing healthier options in their vending machines.

To learn more about HEALTHY VENDING in Oklahoma please contact Chancen.Flick@heart.org.

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Meet Jane Redford, Our Heart Warrior

Name: Jane Redford
Occupation: Director of Business Development at a tech company

How long have you been volunteering with the American Heart Association?

I’m just getting started after my open heart surgery (which was April 11). I’m getting involved in the Dallas area.

Why do you advocate to build healthier lives and communities, free of heart disease
and stroke?

Because I was fortunate enough to get a second chance. I want to help create second chances for more heart warriors.

What are your passions and your interests in life?

Adventure is my passion. I have a stacked bucket list. Now that I have this second chance, I’m more thrilled than ever to cross everything off of it. I’m want to cross most
of the items off with people I love. Life has never felt fuller and more exciting, and I want to share that with the people in my tribe. (I love being outdoors, being in the water (I’m most at home by a lake or ocean, traveling, cooking and writing.)


What is your all time favorite thing to do on your time off?

Travel! Camping, hiking, exploring a new city, etc.


Can you please share about the work you have been doing so far to raise awareness about heart disease and stroke?

Raising my voice as an advocate for heart disease early detection. I want to educate people on symptoms that indicate congenital heart disease, and how to prevent heart disease. I also want to use my voice to help all states adopt an early detection program for congenital heart disease.

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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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Hey Oklahoma! Let's take the #SuperParkSelfie Challenge in July!

Getting as little as 30 minutes of physical activity a day can reduce your risk of cardiovascular disease and stroke. This summer, why not increase your physical activity by taking part in National Park and Recreation Month?

Here’s the latest from the National Recreation and Park Association:

This July, we want you to discover your super powers at your local parks and rec! To see just how SUPER you are, we are challenging you to take a #SuperParkSelfie every week this July. Head out to your nearest park or recreation center and show us how parks and rec super power your life.

Each week has a different selfie theme:

  • July 11-17: Selfie doing something healthy!
  • July 18-24: Selfie with your friends and community!
  • July 25-31: Selfie showing your superhero side!

You’ll be able to submit your selfie via this page, Facebook or by sharing the photo on Twitter and Instagram. Check out information on the prizes and how to enter on the contest page here.

When you share your selfie on social media, please use the AHA Oklahoma Advocacy hashtag #YoureTheCureOK in addition to #SuperParkSelfie and #SuperJuly.  

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Volunteer Spotlight: Dr. Allison Pierce

Please meet our new American Heart Association volunteer leader and Arkansas State Advocacy Committee member, Dr. Allison Pierce.  

Hometown: Dallas, Texas     Current town: Springdale, Arkansas

Favorite movie: Stand By Me
Hobbies: cooking, gardening, home improvement projects, playing with my dogs
Pets: Kizzy (4-year-old blue heeler mix), Red (2-year-old boxer mix), Bill and Pi (2-year-old carpet pythons)

Role model: When in doubt, I look to my mother, who taught me patience, accountability, honesty, kindness, and generosity while making sure I understood that life is precious and to be lived fully every day.

Greatest achievement: I am an aunt to a wonderful four-year-old named Lily, and there is another little one on the way. While this is not necessarily my own achievement, it has brought me more joy than anything else I have experienced, and I have absolutely loved getting to know my younger sister as the beautiful nurturer that she has become. As far as my own achievements, I am looking forward to finishing my psychiatry residency. The path to becoming a physician has required years of focus and commitment, so that day will be quite a milestone.

Two celebrities or historical figures you would want to have dinner with (living or not) and why them? This is a difficult question to answer because there are so many. Maya Angelou comes to mind since her writing has been an inspiration to me for almost my entire life. I hear she could throw a great party, and I would love to talk to her about life, love, politics, and a host of other topics. Slavenka Drakulic is another strong and passionate woman who has inspired me. She endured the oppression of communism and still found joy in life while standing up to her oppressors, often at great risk to herself. She has inspired me in many ways, and I would enjoy hearing some of the more personal stories that don't make it into her writings. If I were hosting a dinner for historical figures or celebrities, it would most certainly be a large group.

Why is advocating with the AHA important to you? Heart disease runs in my family, so it is an issue that hits close to home for me. In my experience as a physician, I have seen the far reaching social, physical, and mental effects of heart disease. It is largely preventable, and advocacy is an integral component in providing education and resources that will empower people to take care of themselves.

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AHA Talks Advocacy at Night Market

On Friday, June 3rd, Oklahoma City AHA Advocacy staff members participated in H&8th Night Market, a street event created to bring the community together to enjoy live music, food trucks and street vendors. 

H&8th was an exciting opportunity for AHA Advocacy staff to engage a diverse demographic and discuss childcare nutrition and physical activity legislation with doctors, public health workers, and teachers. AHA Advocacy staff were able to connect with younger individuals who were receptive and eager to get involved with volunteer efforts. OKC Advocacy staff collected over 100 signatures in support of increasing nutrition and physical education standards in early childcare centers. OKC Advocacy staff were successful in reaching a solid base and raising awareness on this important issue successfully.

To join our You're The Cure advocacy network CLICK HERE.

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Volunteer Spotlight: Meet Caitlyn Cook, Miss Central Arkansas 2016

Caitlyn is a hands-only CPR presenter and educator for the American Heart Association and American Red Cross; Zumba Instructor at University of Central Arkansas HPER Center; Titleholder in the Miss Arkansas Organization (Miss Central Arkansas 2016)

Name: Caitlyn Cook

Hometown: Conway, Arkansas

Favorite Vacation Spot: Mykonos, Greece

Favorite Movie: Gone With the Wind

Hobbies: Singing, Greek and Middle Eastern dancing, fitness training, instructing Zumba Fitness, and competing in pageants.

Why is advocacy with the AHA important to you?

Having lost friends and family members due to heart related issues, I became inspired to find an organization that aligned with my passion of living a heart healthy life. When finding the American Heart Association, I knew I had found the perfect fit for my advocacy. This discovery led to finding my role within this worthy organization as an ambassador for Hands-Only CPR to save lives. I have presented and educated to over 6,000 students and adults in the past two years. My goal is to impact over 10,000 lives on the importance of being emergency prepared.

To learn more about Hands-Only CPR CLICK HERE.

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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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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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