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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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A Lifesaving Delivery

Thirty-two states have passed laws or adopted curriculum changes to require hands-only guidelines-based CPR training for all students before they graduate from high school. That means that each year, more than 1.8 million public high schools graduates will have been trained in CPR.

Just over a year ago, the Maine Legislature overrode the Governor’s veto on LD556, a bill that required schools to offer Hands Only CPR training to all students. The rulemaking on the new law can’t be completed until the Maine Department of Education has a Commissioner, but that does not mean that schools shouldn’t start training their students this year. We are hoping that the rule will be strong enough to require the training for each and every student.  If not, we will continue to strive to make Maine’s law and rules strong enough to meet our evidence-based guidelines.

LD 556 did not have any money attached to it, so the American Heart Association in Maine has been busy trying to raise some funds to purchase CPR in Schools kits for local school districts.  We are committed to do all we can to ensure schools have all the resources they need. I can’t talk about all of our efforts, but I can mention some awesome success we have already had.  There are 2 trusts that were set up to enhance the American Heart Association’s mission in Maine. This year, we used the funds from these trusts to purchase 34 CPR in schools kits. Each kit has all the supplies needed to train hundreds of students (10 at a time)!

The kits arrived at our office on Friday and I was there to help lug them to our little storage room. The excitement from the rest of the AHA staff was palpable (even though the boxes were quite heavy). It is so fun to imagine kids throughout Maine learning skills that could someday save a life.

If you’d like to be involved in making sure your local school district is doing all it can to train students in life-saving CPR, please let me know.  As always, I can be reached at Becky.Smith@heart.org.

Thanks!

 

 

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Portland Passes Tobacco 21- First in the State!

On June 20, Portland became Maine’s first municipality to take the next step to keep all harmful tobacco products out of the hands of our children.  Portland City Council unanimously agreed to an ordinance change that will raise the age to purchase tobacco to 21.  American Heart Association volunteers like Richard Veilleux (Maine Board Chair) and Sarah Porter led the advocacy effort to get this done.  This ordinance will significantly reduce the number of teenagers and young adults who start smoking cigarettes, e-cigarettes, cigars and hookah, or using chewing tobacco.  90% of those who provide cigarettes to younger teens are under the age of 21.

Tobacco use is still the leading cause of preventable death in Maine, and across the country.  Nearly 1,000 Maine kids become daily smokers each year—setting up their developing brains for a lifetime of addiction.  We need to do all we can to reduce the toll of tobacco.

The American Heart Association volunteers who testified at the public hearing said it best:

"I really hope that generations after me will either not start smoking at all, or, they will be able to quit more easily due to more difficult access. Tobacco 21 would not only benefit smokers, but also help people like me see friends and family take steps toward a healthier lifestyle". –Maine College of Art Student and American Heart Association volunteer

"When I was a little kid, my dad spent a lot of time with me. He used to play Ogre Tag with me and my sister on the playground where we’d run and then laugh until we were out of breath. These precious moments could have easily been traded away for the sake of tobacco, since my dad used to be a smoker. He started before he was even eighteen. Nearly twenty-five percent of high school students report using tobacco products, and an estimated 6 million of those kids will die prematurely in adulthood if current trends continue. They won’t have the chance to run with their kids on the playground; they won’t have the chance to laugh like I did with my dad."—Casco Bay High School student and American Heart Association volunteer

"Furthermore, high school students are at a crucial point in brain development. Because of this, the brain may be more vulnerable to the addictive effects of tobacco. The younger one is when they smoke their first cigarette the more likely they are to be a smoker for life." –another Casco Bay HS student and American Heart Association volunteer. 

Advocacy volunteers are crucial to our efforts to reduce tobacco use in Maine. If you’d like to help us in the future, please email me at

becky.smith@heart.org, and thanks.

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Lunch and Learn with a Side of Sunshine

I spend most of my work time striving to reduce heart disease and stroke through changing statewide policies in Maine. Even when the legislature is out of session, the work does not cease. Maine’s American Heart Association Advocacy Committee analyzes Maine’s current landscape for policy, politics and healthcare to see where we can best affect change to reduce Maine’s #1 killer. We look both forward and back. However, even though there is work to do, the pace is definitely slower than when things are hopping in Augusta.

That leaves me time for really fun things like: Inviting a local news crew to your house to film a segment on healthy grilling. WMTW8 does a monthly Heart Health 8 segment for the American Heart Association.  July’s segment airs on July 8th. The segments are timely and very informative.  

If you want to see past segments, please visit: http://bit.ly/29iBZBZ

I was able to observe the entire production and learned a lot about healthy grilling from our awesome advocacy volunteer and dietician, Lori.  Not only does she help me with my food policy work throughout the year, but she makes awesome grilled salmon and stone fruit.  She also grilled veggies, chicken and turkey burgers. There was nary a chip or hotdog in sight—and I did not miss them one bit. The best part was eating everything once the shoot was over.

The American Heart Association uses every available route to encourage healthy lifestyles. Media, workplace outreach, online resources, school programs, fundraisers and, of course, policy change.

The goal is to reduce heart disease and stroke, but we definitely have fun along the way.

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Meredith McNeil, Maine

On July 9, 2014, I suffered a stroke. I was as healthy as one could be, a triathlete and marathoner in the middle of training for my 5th marathon. When I arrived at hospital, I experienced first-hand how a hospital handles a stroke victim.  It was remarkable to witness and I am happy to say I have made a complete recovery and 10 months later I completed that 5th marathon with a new personal record.

Your donations matter. Being part of You’re the Cure, matters. Your involvement helps save lives by encouraging hospitals to implement programs and protocols that help people like me get the care they need right away.

Not only do I work for the American Heart Association, I am proud to be a You’re the Cure Advocate. I know that the work the American Heart Association does in Washington D.C., Augusta, Maine and all across the country ensures that people like me have access to the to the tools they need to make their lives as happy and healthy as mine!

As you can imagine, the work we do here at the AHA is near and dear to my heart and I am able spread awareness not only as a staff member but as an advocate and survivor!

 

 

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You Can Detect a Stroke

I grew up worshipping Nancy Drew. Now, my daughter loves her as well.  My daughter has a notebook that she fills with mysteries that she is trying to solve—it is really cool.

Everyone knows that Nancy Drew is someone you want to have around in a pinch (or if you are held hostage by evil inn owners).  However, you don’t need to be Nancy Drew to recognize the signs and symptoms of stroke. You just have to remember F.A.S.T.  Fast stands for:

Face (does one side of their face droop?)

Arms (does one arm drift downward when you ask them to raise their arms?)

Speech (does his or her speech seem slurred or strange?)

Time (time to call 9-1-1!)

If you think someone is having a stroke, look for the clues and act FAST!  The American Heart Association and American Stroke Association have worked tirelessly to make sure there are protocols and policies in place to assist stroke patients and make sure the entire system of care is structured for the best possible outcome. However, it is up to you and me to make sure someone having a stroke gets high quality care as soon as possible.

Remember F.A.S.T. and as always, if you want to be more involved in our advocacy efforts, please just shoot me an email to becky.smith@heart.org. Bess, George and I need your help.

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Time for Thanks

Now that the hustle and bustle of the legislative session is over, we take a deep breath and then give thanks.  Maine’s legislators work hard to represent their constituents while they are in Augusta. Maine technically has a part-time legislature, but being a legislator can be a full time job.  Now that the legislators are home, they are not resting on their laurels.  Many of them are out and about knocking on doors, attending bean suppers and marching in parades. They are making the case that they deserve your vote.

The American Heart Association will be taking this "down time" to plan our next legislative agenda, to recruit more volunteers and yes, to enjoy the Maine summer a bit as well.

First, however, the Maine American Heart Association Advocacy Committee is busy writing thank you notes to certain legislators who bucked their party leadership and supported our efforts to help all Maine residents have access to the health care they need.

Hopefully some of you saw my email asking you to thank your legislators for their votes to support Medicaid Expansion. Unfortunately, all of you did not see this email because there were legislators who did not support our efforts. That does not mean we won’t try again.  Maybe next time more of you will be able to write thank you notes!

As always, if you want to be more involved in our advocacy efforts, please just shoot me an email:  becky.smith@heart.org

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Without Day

On April 29, The Maine Legislature adjourned Sine Die.

Sine Die is Latin for "Without Day."  This is the phrase used when a legislature or assembly does not assign another day to meet.  Obviously, the Maine Legislature is coming back after the election in November, but there is no day assigned.  This wraps up the 127th Maine Legislature.

The Second Regular Session of the 127th Legislature was a mixed bag for the American Heart Association. 

We were crushed by the extremely short-sightedness of the minority of our legislators who put election-year politics over providing close to 80,000 Maine residents with comprehensive health care.  For just a small investment of state dollars (which we had) the Federal Government was ready to give Maine hundreds of millions of dollars to provide health care to our hardworking, low income neighbors.  The hard truth is that some of our friends and neighbors will die without this care.  That is why we keep fighting.

However, there were a few small bright spots.  First, there were no further cuts to Maine’s woefully underfunded public health programs.  Second, the Legislature passed a bill that strives to get more Maine produce and seafood into our foodbanks.  This $3 million investment will allow those with food insecurity to provide their families with healthy food.  We worked closely with our partners at the Maine Public Health Association, The Good Shepard Food Bank and the American Cancer Society Cancer Action Network to get this done.  Thanks to all of you who helped along the way.

So, now we get ready for the 128th Legislature.  We will work to educate all candidates about the importance of cardiovascular health so we can have an educated legislature going forward.

As always, if you want to help, please email at Becky.Smith@heart.org

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Making Connections for Maine Survivors

Last week, the American Heart Association in Maine hosted our first ever survivor gathering at OceanView at Falmouth.  It was a resounding success.  Approximately 50 heart disease and stroke survivors were able to network and hear the amazing Pat Kirby tell her story of surviving misdiagnosis, numerous complications and learning to be her own best advocate. Pat is the inspiration behind Clarisse in Silence of the Lambs—the first female profiler in the FBI. If you ever get a chance to hear her speak, go!

A blogger from the Bangor Daily News was also there and she wrote this excellent piece about the event.

http://twicesoldtales.bangordailynews.com/2016/04/28/home/survivors-of-heart-disease-stroke-gather-to-share-stories/

If you are interested in attending future events, please visit heart.org/Maine or find us on Facebook at American Heart Association in Maine.

Survivors are also some of our best advocates at the State House, town councils and in Washington D.C.  Without survivors telling their stories of why access to health care is important, why healthy eating, avoiding tobacco, and exercise have improved their lives, and why we need to fund public health programs, we could not be successful.

Thank you to all the survivors out there who answer the call and talk to their policy makers about the American Heart Association and all we do.  If you would like to be involved, email me at:  Becky.Smith@heart.org

Becky

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Falling on Deaf Ears

All winter and spring, volunteers from the American Heart Association have been meeting with legislators, writing letters to the editor, making calls and sending email.  Why?  Because one of the most lifesaving bills in the past decade is being debated in the state house. 

LD633 would accept the federal funds already set aside for Maine to help low income Mainers get the health care they need.  The bill, a Republican initiative, was carefully crafted in order to help these hard working (most of these folks have jobs) people get preventative care, while assuring that Maine would be able to back out of the program if the federal funding was all of a sudden unavailable.

I am worried, however, that all of our pleas may fall on deaf ears.  All of the Legislature’s Democrats and some Republicans support the measure, but we need more in order to override the expected Governor’s veto.

Even though this bill will help 70,000 Mainers, and won’t cost the state much money, political ideology and the inability to step back and assess the true harm done by not accepting these funds may derail our efforts.

The *only* way we can get the wavering legislators to vote for this bill is if they hear a public outcry.  They have to know that their constituents, friends and neighbors demand that they do this.  Otherwise, the ideologues will convince them that, despite all the evidence (and I have reams of evidence), this is not good for Maine.  

Just the other day, someone said to me:  "You know, if we were talking about investing a few million Maine dollars to draw down over $400 million from the Feds for roads, or any other part of the budget, this would be a no-brainer."  They are right.  Why, then can’t we help our friends and neighbors get the health care they need before their strokes and heart attacks?  Why do we insist that hospitals pay millions in uncompensated care once their uncontrolled high blood pressure or cholesterol send them to the ER?  It is unbelievable and unfair.

It is time to take out your bullhorns. Email me at: becky.smith@heart.org FMI

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