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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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Let's Keep NJ's Young Hearts Healthy

Over the past year, several states and numerous municipalities throughout the nation have opted to raise the age to purchase tobacco and e-cigarettes to 21. New Jersey is among the many states that is considering raising the age. The Senate voted to raise the age in June. It is our hope that the Assembly will act soon and that Governor Christie will sign the measure into law soon.

Approximately 95% of adult smokers picked up the habit prior to age 21 and youth use of e-cigarettes has been increasing at a staggering rate. The CDC reported in June that 24%, nearly one-quarter, of high school students reported that they had used an e-cigarette in the previous 30 days. The longer we can keep tobacco and other nicotine products out of the hands of young people, the less likely it is that they will develop a potentially lethal addiction to nicotine.

I hope that you, and all "You're the Cure" advocates, will join us in raising our voices over the next few months in support of increasing the age to purchase tobacco and e-cigarettes in New Jersey to 21.

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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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Catherine Zalewski, New Jersey

Catherine Zalewski is a mother of 2, a certified personal trainer, a former Mrs. New Jersey and a stroke survivor. She suffered her first stroke at the age of 28, about 6 months after giving birth to her daughter. It was discovered that she had a hole in heart which was repaired through surgery. She suffered another stroke shortly after the birth of her second child.

When Catherine had her first stroke, she was home alone with her infant and didn't know what was happening. She didn't receive treatment until 7 hours later. It took weeks for her to relearn how to do everyday tasks like walking and taking care of her baby. During the second stroke, she was at work with a client and someone realized what was happening. They called 911 immediately and she was taken to the hospital. She received tPA within an hour and it made a world of difference. This time, she went home within a week and was able to go back to her normal routine quickly.

Catherine knows firsthand how important it is for stroke patients to receive quality care in a timely fashion. That is why she is a volunteer advocate for the American Heart Association| American Stroke Association. Recently, Catherine testified before the Senate Health, Human Services and Senior Citizens Committee on legislation that will improve the stroke system of care in New Jersey. She looks forward to continuing her advocacy as the bill makes it's way through the Legislature.

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Healthier Choices Just Around the Corner!

The Healthy Small Food Retailer Act has made it through the Legislature in late June and is now on Governor Christie's desk! This bill would provide state support for programs that assist small corner stores and bodegas with offering healthy food for sale, such as the NJ Healthy Corner Store Initiative. "You're the Cure" volunteers throughout NJ have been advocating for this legislation for over a year and our hard work is finally paying off!

Governor Christie will need to act on the bill by the fall. The American Heart Association and our partner organizations urge the Governor to sign this legislation that promotes healthy food access and economic development in communities that are underserved by supermarkets.

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Strengthening the Chain of Survival in NJ

On June 6, several "You're the Cure" advocates in New Jersey successfully advocated for passage of the NJ stroke bill out of the Senate Health Committee!

The bill would strengthen requirements for primary and comprehensive stroke centers, recognize acute stroke ready hospitals, ensure that emergency medical services providers receive appropriate training and have protocols in place to transport stroke patients and provide coverage for telestroke services.

This is the first step in the process and we look forward to working with the NJ legislature to strengthen stroke care in NJ!

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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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Spotlight on Stroke in the Garden State!

Throughout May, the American Heart Association|American Stroke Association focuses attention on New Jersey's third leading cause of death: stroke. Not only is stroke a leading cause of death, but it is also a leading cause of disability.

New Jersey is a leader in stroke care, but a bill was recently introduced that would make several improvements in the current system of care. This bill would require that hospitals that are designated as stroke centers are regularly inspected to ensure that they meet stringent criteria for stroke care, ensure that EMS providers have protocols in place so that stroke patients are taken to an appropriate facility, and would require health insurance coverage for stroke care services provided via telemedicine.

We are fortunate to live in a state where stroke treatment has been a priority for years. Implementing the changes to the system proposed in Senate Bill S1936 and Assembly Bill A3423 will ensure that New Jersey residents continue to receive the best treatment possible.

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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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