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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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Health is Why!

Meet Elaine Larson, Minnesota's Youth Market Admin and top staff volunteer!

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What brought you to be an advocate for the American Heart Association?

You can stand behind the things that the American Heart Association is trying to do - better health for all through many avenues and lowering health costs.

What issues or policies are you most passionate about and why?

I work with the Youth Market division and we are trying to keep Physical Education a top priority so students can learn effectively and be productive at school.

What is your favorite advocacy memory or experience so far and what made it great?

I like the lobby days. It is hectic but it is great to see your legislators and get more education about the health issues we are lobbying about. I probably would not do it on my own so it is encouraging to have others to come along side of you in pursuing these goals.

What is your favorite way to be active?

I like to ride bike.

What is your favorite fruit or vegetable?

Tangerines

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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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Participate in your local August Recess!

We are looking for volunteers to take a meeting with their member of Congress while they are in town this August.

Important federal advocacy goals for Congress this year include:

  • CR (Cardiac Rehab) – changing a key Medicare provision so that those who have survived a coronary event can have easier access to rehabilitation programs
  • FA (FAST Act) – helping connect more stroke patients to life-saving telemedicine services
  • CNR (Childhood Nutrition Reauthorization) – protecting strong school nutrition standards
  • NIH (National Institutes of Health) – increasing federal research funding

 This is an important opportunity for us to get heart and stroke issues in front of our federal elected officials. If you can help us out, please contact Jess Nolan (jess.nolan@heart.org or 952-278-7928) as soon as possible.

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Norman is Why!

Meet Norman Petrik, one of AHA's top volunteers!

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What brought you to be an advocate for the American Heart Association?

I have always been an advocate for lobbying, and after my heart surgery, that became important oo.

What issues or policies are you most passionate about and why?

Urging people to eat healthy and exercise.

What is your favorite advocacy memory or experience so far and what made it great?

Going to the Minnesota legislature with other AHA members to speak to my legislators.

What is your favorite way to be active?

Biking outside if it is safe, or using the fitness center at Minneapolis VH when I am there to visity heart surgery patients for Mended Hearts.

What is your favorite fruit of vegetable?

Orange and apple every day for lunch, lettuce salad for supper.

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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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Legislative Session is Over, How Did We Do?

The legislature has adjourned for the 2016 session and as you likely have heard they worked right down to the deadline. The heart-health policies we have been working on celebrated some big wins and a few disappointments. Take a minute to read our recap below. Stay tuned for possible special session to address some of the issues the legislature failed to reach agreement on—transportation, bonding, and other issues.

The Wins

STEMI System of Care – We have built a system of care for the most time sensitive type of heart attack, a STEMI. The new legislation authorizes the MN Department of Health to designate STEMI Receiving Centers and requires all EMS services in the state to have current triage and transport protocols for STEMI Patients. As a result of this success the state’s 5.4+ million residents, including those 8,000+ individuals who suffer a STEMI each year, will now be more likely to receive the right care, at the right time, in the right place, regardless of where they live in the state. This legislation has been a long time in the works and is now law thanks to your support and actions!

Strengthening Physical Education – We strengthened physical education this year by requiring new/updated PE standards and grade-specific benchmarks which were adopted as part of the supplemental budget bill (HF2749). Standards and benchmarks had not been updated since 2004! Much has changed since then to focus PE on physical fitness rather than competitive sports. This is a great win for Minnesota’s kids—stronger PE=healthier, happier, academically successful kids!

Good Food Access Fund – When we launched this campaign last fall, we hoped to build awareness about healthy food access with legislators this session, but ended up striking a serious chord for policymakers and stakeholders who want to see healthy food access addressed ASAP! The Senate language establishing the program, with $250,000 in one-time funding, was included in the supplemental budget bill under the Agriculture Article (HF2749). This small infusion of funds and establishment of the program in state statute will provide significant momentum to fully fund the Good Food Access Fund in 2017 (we are seeking $10 million per year for the fund). Stay tuned for more ways you can help keep this campaign moving forward and make it top of mind for lawmakers in the coming months.

Still in the Fight

Safe Routes to School – We are seeking a $6 million investment in safe routes to infrastructure in the capital investment/bonding bill. As you may have heard, no bonding bill was passed due to a last minute breakdown in the deal. The final version of the bonding bill did include funding for SRTS—up to $6 million at the discretion of the MNDOT commissioner. Possibility of a special session to pass a bonding bill is unclear at this time, but we will keep you posted when we know more and what actions you can take on this issue.

Active Transportation – As you have heard, no transportation bill was passed this session despite very intense negotiations throughout session and strong leadership by Chairman Dibble to fight for funding dedicated to active transportation – funding for walking and biking as part of a multi-modal comprehensive transportation package. This is one of the issues that is likely to resurface if a special session is called. We will continue to work this issue and ensure that walk/bike funding is a core part of the negotiations during a potential special session and next session.

Thank you for you action this year! It is because of dedicated advocates like you that we have been so successful! Please stay tuned for ways you can continue to help during the summer and fall!

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Rory is Why!

Meet AHA's new Corporate Health Engagement Director - Natalie McShane!


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What brought you to be an advocate for the American Heart Association?

I have been passionate about the work of the AHA since my father-in-law passed away unexpectedly from a heart attack. I have been involved in the Young Professional Ambassador group in the past and truly believe in the mission of saving lives. It's such an awesome experience to be a part of something so impactful!

What issues or policies are you most passionate about and why?

Safe routes to school is one of the issues I'm most passionate about currently. Having a little one, I know how important it is to have the ability and benefits of walking to school!

What is your favorite advocacy memory or experience so far and what made it great?

Attending the Good Food Access Fund event this year was an eye opening and educational experience for me. I had no idea that the AHA was involved with so many other organizations working to help make the healthy choice the easy choice throughout our state!

What is your favorite way to be active?

I LOVE to dance! While I do enjoy running outside while listening to some good tunes, my favorite way to get my heart pumping is dancing!

What is your favorite fruit or vegetable?

Pineapples!

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My Life is Why!

Meet AHA volunteer, Angie Chafos!
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What brought you to be an advocate for the American Heart Association?

In 2010, I survived a heart attack. My left anterior descending artery was 100 percent blocked. When I experienced a very sharp pain from the front of my chest to my back, I realized this was critical, took two aspirin and rushed to the hospital. Time is muscle.

What issues or policies are you most passionate about and why?

Awareness and education about heart disease is valuable. Everyone should be knowledgeable about heart disease because more people die from heart disease than any other disease. Recognizing symptoms, screening to manage heart related numbers, eating better and exercising are essential elements to living a heart healthy lifestyle for optimum health and living LIFE! I have been a AHA Neighborhood Volunteer for many years to get the word out about research and heart health information.

What is your favorite advocacy memory or experience so far and what made it great?

Before my heart attack, I had never been on an exercise program. Through cardiac rehabilitation therapy, I learned how to use the treadmill and other exercise equipment as well as learning tai chi and yoga. My best friend is my pedometer which is always on my body enforcing my goal to reach 10,000 steps. Having professionals teaching me how to exercise and encouraging me to exercise to be heart healthy was a valuable life lesson.

What is your favorite way to be active?

Walking is the easiest form of exercise and requires no special equipment except for a good pair of walking shoes. I walk for causes and fundraising events with groups of people, thereby helping others with others while getting in my 10,000 steps.

What is your favorite fruit or vegetable?

Beets have always been my favorite vegetables, and oranges my favorite fruit.

 

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