Live Like Ellie
On July 14, 2014 Ellie Helton finished her first day of high school. The next morning she awoke with a headache and within minutes became unresponsive. After rushing her to WakeMed Raleigh, and then UNC Children’s Hospital, she eventually succumbed to complications brought on by a ruptured brain aneurysm – something we didn’t even know she had. Ellie was a good kid who loved God, her family, friends and school. Some of her favorite things included superheroes, Minions, Reese's Peanut Butter Cups and Pizza. She had a wonderful spirit and a personality that saw people equally. She was for all that was good. Losing Ellie has been a devastating blow to our family. However, we are determined to bring good from this situation so, hopefully, other families are spared our tragic experience.
We have been blessed with an incredible community of friends and family. They have wrapped their arms around us during this difficult time and have supported us, encouraged us and loved us. This has given us time to grieve, care for her younger sisters, Grace and Anna, and begin to move our family forward.
On October 17 of this year, we hosted the first Ellie Helton Memorial 5K & Fun Run at WakeMed Soccer Park in Cary, NC, to benefit the Brain Aneurysm Foundation. We started with a goal of 150 runners and $10,000. With the support of the local business and medical communities, friends and family near and far, an army of volunteers and special guests that included Congresswoman Renee Ellmers and the Duke Blue Devil, we ended up with more than 500 runners and nearly $44,000 to go toward brain aneurysm awareness, education and The Ellie Helton Chair of Research. All because of a quirky kid with a huge heart who touched many.
What made Ellie the person she was?
• Super heroes were her kind of people. They are for all that is good and so was Ellie. She didn't like things that were unfair.
• Her mind and imagination ran non-stop. She was quirky and unique. She could be argumentative and strong-willed. There were days when those traits were the best things in the world and others where it could drive you crazy. But the crazy days were never intentional; they were just her trying to make her way in the world.
• Because she was different she never saw that in others and loved unconditionally, even when she didn't receive that in return at times. We know she is now in heaven and being loved unconditionally and is whole and happy in every way imaginable. She is accepted for who she is by all around her.
• We wore pink at her service, as did many friends, family and even strangers around the country that day to honor Ellie because that was her favorite color and vivid was her style
• When it became obvious the aneurysm was going to be too much to overcome, her doctor put it so perfectly that the 'essence of Ellie' was no longer with us. When her heart, after so much fighting over the two days, continued to beat longer than expected, the nurse described her as having a 'strong heart,' which also summed her up so well. She fought. She battled. She persevered through a lot in her life and that part of her character really revealed itself to us in the end.
• She was loved and she loved. She loved her family - especially her sisters Grace and Anna - our dog Sadie, her friends, her church and her school. She loved God and was making plans for her baptism, which is why we had her baptized in the hospital in her final hours. We wanted to honor that last, true wish of hers and send her off to God with it fulfilled.
• Ellie danced like no one was watching and sang like no one was listening. We hope her legacy is one of encouragement to always be yourself and let that shine through: eat a Reese's cup every now and then, feel like a superhero and wear pink somewhere you wouldn't expect to see it. Thank you for allowing us to share a little bit of her with you today.
Did you know?
• 1 in 50 people has an unruptured brain aneurysm – that equates to 6 million Americans
• 30,000 ruptures occur each year in the United States
• A rupture occurs every 18 minutes
• Ruptures are fatal in 40% of all cases; of those who survive, roughly 66% suffer some permanent neurological deficit
• Brain aneurysms are more likely to occur between the ages of 35-60 (so Ellie’s was unusual) and women are more likely than men to have one
Brain Aneurysm Foundation - http://www.bafound.org/
Review from #MyGivingStory
My family and I chose to give to the Brain Aneurysm Foundation this past September 2015 because my Mother died unexpectedly at the age of 59 from a brain aneurysm. We named our walk, 'A Walk to Remember Mona Ann Boesen'. Mona was the light of our lives and an inspiration to all who knew her! Her motto in life was: 'Life is a celebration!' We organized a walk on behalf of the BAF and we were able to raise $5,540. It brings us a lot of joy and happiness knowing that we are helping to help others become aware of brain aneurysms and the signs and symptoms. I'm so thankful to have found the BAF organization and now each year we will organize a walk and hope to raise more and more money each year! My Mother died in September which also happens to be brain aneurysm awareness month. September is now the month our family has chosen to have our event each year which gives us something positive to look forward to. Thank you to the Brain Aneurysm Foundation for what you are doing to help bring awareness to others. We will continue to help you in this fight!
-Tanya Marcella and family
Review from #MyGivingStory
I tugged at the wheels to move my wheelchair with tears streaming down my face. How could I have ended up blind, paralyzed and confused in a wheelchair. At one time, I had my dream job as a radio reporter in Chicago. My friends knew me as Zsa Zsa because I turned into a glamorpuss once I started making real money. And now this. I felt like a burden to my family. I was blind, paralyzed and unable to live on my own.
It all started on March 22, 2004. I slipped out of my office early at WTVN radio in Columbus, Ohio, to walk my dog Bogie. When I arrived at my apartment, I was struck with a massive headache. It was a piercing headache that felt like my ears were going to pop off. I immediately called my mom in Glen Ellyn. I figured if I was going to die, I would call my mom to say goodbye. I told her about the headache, and she told me to get to an emergency room. I have no memory of the rest of the day. I called 911 and told the operator: “I have the biggest headache on the planet. I need help.” I collapsed on my kitchen floor, stricken with a brain aneurysm. When I arrived at the hospital, Dr. Joseph Shehadi at Columbus’ Grant Medical Center described my condition as “at death’s door.” Before my emergency brain surgery, Dr. Shehadi told me quietly to “be brave.” I underwent a six-hour operation, during which a metal clip was placed on the ruptured brain aneurysm to stop the bleeding. Doctors gave me a 3 percent chance to live. I spent several weeks unconscious, recovering from the surgery. My father sat at my bedside every night while I lay there, reading my favorite children’s stories to me. While I was in a coma, I dreamed I was back in Chicago shopping along Michigan Avenue at the Louis Vuitton store.
My co-workers and friends visited me daily, and I was on prayer lists across the country. I woke up three weeks later and learned that Julia Roberts was pregnant with twins, J Lo got married and that I had missed Easter. My recovery was bumpy but everyone knew I was back to my old self when I flipped off a nurse in the hospital. The offensive gesture was a positive sign to my friends and family that I was back to my usual feisty self. After more than a year in physical therapy in Ohio and multiple eye operations, this near death experience forced me to educate myself. I eventually made contact with the Brain Aneurysm Foundation. I realized that its support, educational materials and an awareness campaign for survivors and caregivers would help others recover. I am now 100 percent recovered and am extremely grateful for the extraordinary medical care I received in Columbus and for all of the support from my family, friends and The Brain Aneurysm Foundation.
I am reminded of what former Ohio State University Football Coach Woody Hayes said: “You can never really pay back. You can only pay forward.” I have since moved back to Chicago and began to “pay forward” in Illinois. In April 2009, the Illinois House passed a bill permanently make September Brain Aneurysm Awareness Month in Illinois. The bill was sponsored by State Representative Sandra Pihos. With the partnership of a fellow survivor in Ohio, I was able to help the Ohio General Assembly craft a similar bill. At least half a dozen states are working on awareness legislation. I also have been using my Chicago radio journalism experience and marketing background to promote the dangers of brain aneurysms.
I have been hesitant to step into the spotlight about my brain aneurysm, not knowing if people will look at me differently. However, I am compelled to use my past illness to encourage survivors and caregivers to never give up and to support the Brain Aneurysm Foundation.
Review from #MyGivingStory
Performing without a Net!
It sounds like a cliché but it really was a dark and stormy night in the city of Boston on November 8, 1996. After a long week of training at my company's headquarters in Philadelphia, I flew up to Boston to meet up with a friend to take in the sights of this historic and vibrant city. Little did I know that my world would change hours later in completely unexpected ways for these past 19 years.
Since the weather had not been cooperative, we decided just to order in a meal of seafood chowder and a bottle of wine while taking in the movie, “Courage Under Fire,” which is pretty ironic giving the fact that a few hours later, without warning, my brain exploded. Now I was the one whose courage would be under fire! Having been resuscitated after a grand mal seizure and respiratory arrest, I woke up an hour later in the ER at the Tufts/New England Medical Center with a circle of staff in scrubs peering down at me and firing off too many questions for my now damaged brain to comprehend. As an ICU nurse, I knew immediately that I was in real trouble.
The next month turned out to be one of the difficult of my life, dealing with recovering from the craniotomy to clip the aneurysm, with complications from the surgery (including my ability to speak for some time), and ultimately the overwhelming task of beginning a recovery process. There was no real support to be found anywhere, except among my former colleagues who understood perhaps even better than I did, how incredibly fortunate I was to have survived this. My own maternal grandfather had died of an aneurysm at 42 years old; I had been 43. It was the beginning of a very long and often lonely journey over many years...
Gradually, I educated myself by doing research about aneurysms. Initially I had been diagnosed with a second aneurysm that was still quite small and was to be monitored for signs that it was growing. The thought that this could happen to me again was terrifying and the only way I knew to combat that terror was through knowledge and education. With what I had learned, I truly wanted to work towards educating others but there were very few platforms on the internet of the day for sharing my experience with anyone. One of the most critical elements of recovery is a source of support and education for survivors, their families, their caregivers, friends, and employers. Then one day, I found a central, credible organization with of all kinds of information and tools on the Brain Aneurysm Foundation's website at http://www.bafound.org/. It was a defining and very positive moment in my journey from that day forward. I no longer had to perform without a net!
Over time, I became involved as a volunteer and donor with the Foundation and began to find ways of reaching out to others in order to help raise awareness about this frequently silent killer of almost 30,000 Americans a year. Although I was no longer able to work as a clinical nurse due to some of my cognitive deficits, working with the Foundation was a way for me to continue wearing my nurse's cap by participating in support groups and attending the BAF Lobby Congress day each May for the past several years. This opportunity has allowed me to have a real voice, meet other survivors, meet the families of so many who have either lost loved ones to this condition or the caregivers of others who have survived but live with lifelong deficits and disabilities. This has been so very gratifying on many different rewarding levels.
My dream is to one day fund a research chair for the Brain Aneurysm Foundation to advance research on improved detection and treatment of aneurysms. Of great importance to me is creating a better national protocol for first responders and Emergency Medicine professionals to properly triage and diagnose aneurysm events in a more timely and consistent manner. Once diagnosed, the choice of treatment must be determined expertly. Sometimes this means transporting a patient to a facility that has the experience to treat brain injuries to effect the optimal outcome using “best practices” standards for care. Sadly, we are not there yet in the current healthcare climate and too many lives are lost as a result.
By entering the 2015 Giving Tuesday competition, I am designating my non-profit organization is the Brain Aneurysm Foundation, whose url is http://www.bafound.org/ . A grant to BAF, whose staff and Boards have worked so hard “Raising Awareness. Ending Fear” as their motto states, would be money very well spent. I am happy and humbled to be a part of these efforts. What was initially a devastating and life-changing event, my own story has evolved into a positive contribution to the collective whole of our community of survivors to further the mission of educating the general public to the dangers of brain aneurysms. It is humbling work that I will continue with a sense of true purpose for all my time to come.
Review from #MyGivingStory
Kristen's Legacy of Love embodies the meaning of selfless giving and compassionate love. Kristen Shafer Englert passed away on November 24, 2013 from a ruptured brain aneurysm, just three weeks after she delivered a beautiful son. The emotions during a three week period ranged from euphoria at the birth of a beautiful baby boy to despair at the loss of a beautiful young woman. Kristen loved children and they loved her. She worked in a preschool and was completing her Master's degree in Education( that degree was awarded posthumously). Our hearts were broken. We needed to make some meaning out of such a tragic life altering event.
Giving helps with healing! Contacting the Brain Aneurysm Foundation for information and support was the catalyst for us to begin a never ending campaign to raise awareness, promote research, intervention and prevention. A Chair of Research in Kristen's Legacy of Love name would be the ultimate tribute. We held the First Annual Kristen's Legacy of Love 5K race/1 mile walk on May 18, 2014. Close to 300 registrants, local sponsors and dedicated friends and family joined and contributed. We raised close to $26,000. This was just six months after our loss. The second race on May 17, 2014 was equally successful raising almost $22,000. All funds raised were for the Brain Aneurysm Foundation, a premier non profit organization established in 1994. Plans for our third race have already begun, with a similar Sunday in May 2016 anticipated. May has been our chosen month for our event as May was Kristen's birthday month. The monies raised have been dedicated to research grants for well deserved recipients. Their dedication to cure and treatment will save lives and preserve life quality.
If we are blessed to receive monies from My Giving Story for the Brain Aneurysm Foundation, it will benefit many. According to the BAF '1 in 50 people have brain aneurysms. It is estimated that each year 25,000 people will suffer a ruptured brain aneurysm. Almost half of those affected will die'.
Review from #MyGivingStory
My mother had an aneurysm surgically clipped in September of 1991 after we stumbled across it and thank goodness before it ruptured. During that surgery, a medical professional from her team of doctors was talking very candidly to me, my father, and my two sisters. He was stressing the importance of us being scanned as they were unsure then of the hereditary value to these. So, we were all three scanned back then, yes, and come back with nothing to be concerned about but who knew then that we should have continually been retested as not only did I end up having one that started leaking on June 4, 2012 but I had a second one that was bigger then the first one. No, it hadn't started to leak yet, thank goodness, but did have to be surgically clipped 10 weeks after the first one, August 14, 2012. I suffered a stroke during the clipping of #2 and several vaso spasms, one so grand that I did go to Heaven and can't wait to go back. I spent that whole summer in and out of the hospitals between surgeries and therapy sessions. All I can remember about my thinking process during that time was how in the world did I get two after being told that I was fine back in 1991. ? I started doing my own on line research and not only stumbled across The Brain Aneurysm Foundation and their efforts but also became increasingly nervous for my children. Yes, my daughter has already been scanned twice, with no negative concerns, but is with a doctor that knows of the concern and will follow up with her for a new scan every 5 or so years. I have been God blessed in my recovery and understand that I recovered the way I have so that I can fight this fight for ALL. There are several issues close to my heart because of all of this, yes, but my recovery from both of these has laid the path for my battles. I will continue to fight so that ALL know about aneurysms and the wrath they can ensue so that hopefully those that have to experience this in the future will not have the same tortuous path that those of us have already experienced with ours. I have participated in The Brain Aneurysm Foundations lobby day for two years. Dragging my parents along as well. In fact, how my mother was able to go through all of this without any support groups or help at all mesmerizes me. To watch my parents and their involvement with The Brain Aneurysm Foundation is also mesmerizing. I've brought the government plight to those at the State of Indiana and have been given proclomations for the month of September for two years in a row. State Senator, Patricia Miller, is also currently working on a law to pass at our next session acknowledging September as Brain Aneurysm Awareness month. I am working very hard to make EVERYONE know that WE KNOW HOW TO FIND IF YOU HAVE ONE, AND WE KNOW HOW TO FIX IT before it ruptures and kills or mames drastically.
Review from #MyGivingStory
Happy New Year. I was on my way to meet some friends for our annual party on 12/31/05. First I had to make a stop at the mall for my parents anniversary gift for the next day. I purchased the crock pot and came out and put it in the trunk of my car. I started walking to the drivers side and bam. Out of nowhere my head really stated to hurt. I put my fingers to my temples and thought 'wow, that really hurts, I better sit down'. I never made it to the door. I went down. I have very limited memories there, but I was told that a nice gentleman witnessed and called for help stating I had a seizure. He stayed with me until help arrived. I was taken to the local hospital and scanned and my family, once they got there, was told that I had a bad bleed may never wake up. I was transferred to Mass General Hospital in Boston and was hooked up with my hero, Dr Christopher Ogilvy. He told my family what was going on and proceeded to do what he does best, fix broken brains. The were people at the hospital who knew about the Brain Aneurysm Foundation and told my family about it. They supplied information, both educational and supportive, and answered all the questions that were brought up. The foundation was consistently helpful in guiding my family to where they needed to be at any given point in my recovery. Thankfully, they are all my friends now. I am helping them in every way I can too raise awareness and alertness, even by lobbying in Washington, DC. Raising awareness is ending fear. The support groups and research dollars that they are responsible for are saving lives, especially in quality. I will support them to eternity.
Review from #MyGivingStory