A Legendary Success..

Dear Friends,

On behalf of the Quinn Driscoll Foundation Board of Directors I would like to extend a warm and gracious thank you for your support at our second annual Legends event. Once again the evening far exceeded our expectations proving our community (and extended community) is dedicated to protecting our greatest assets against sudden cardiac arrest, our children

With your gracious support, we raised nearly $70,000 in total receipts for the event including ticket sales, sponsorships, donations and purchases. After expenses, over $50,000 will be put back into our local area for cardiac screenings, awareness programs and grants for automated external defibrillators (AED). That is a 67% increase in giving! Those funds will be put back into our community through screenings, educational programs as life-saving automated external defibrillators.

In addition to the Legends event, we would like to acknowledge (2) outstanding efforts by friends of the QDF; Ben O’Connor and the ownership/staff at Salon Deluge. Through Ben’s efforts of growing a mustache for the month of March, he raised nearly $3500 in pledges for those who wanted to see him in a mustache! Not to be outdone, Salon Deluge in Vancouver hosted a cut-a-thon and raised $1000 for the QDF! Words cannot express our gratitude.

We would also like to thank our honorary legends; Bill Schonely, Bo Kimble, Kayla Burt and Keilea Swearingen. You all made the evening an amazing success. Moreover, to our hundreds of volunteers who help us day in and day out, without you, we could not accomplish our goals. Thank you.

We are looking forward to continuing our mission head-on in 2012 and are dedicated to representing your gracious support with honor. We at the Quinn Driscoll Foundation and with our valued partners at Peace Health Southwest Medical Heart and Vascular are planning added screenings across SW Washington and assisting those in other areas with our learning’s. Moreover, we look to extend our reach providing schools and other community focused organizations funds for the purchase of AED’s.

However encouraged about our upcoming year, I would be remiss in not mentioning our namesake Quinn and the thousands of lost legends. In their honor and memory, please remember these important points:

- Understand the symptoms of cardiac issues
- Know your family health history and communicate with your family physician
- Get CPR/AED certified
- Promote routine cardiac screenings in our most valuable assets, our children

Every child deserves to be legend!

IMHO...

I wanted to publish a response I wrote to a blog posting of a pediatrician from Seattle. Her blog focuses on providing parents with practical guidance and general information in the world of pediatrics. Her most recent post "Sudden Cardiac Death: What Parents Can Do" is a nice piece and provides general information about sudden cardiac arrest in our youth. I encourage you to read the post as it provides good information we should all know, however as most guidance goes, her article is not addressing the real issues...

MY REPLY:

As a parent who lost a 13 year old to sudden cardiac arrest as a result of hypertrophic cardiomyopathy, I want to respond to your article and call out the need to go beyond a reposting of the same information over and over again. Although I applaud your efforts to educate and raise awareness, little is published about how serious this problem really is. Not just the same data being regurgitated over and over again, but someone to talk about how little the medical community really understands about sudden cardiac arrest in our young.

First and foremost, the medical community appears to be driven by statistical data surrounding sudden cardiac arrest in the young that is neither valid nor germane to truly driving to a ubiquitous solution to the problem. The data collect and published is not scientific; it is based upon hearsay and is based on the aggregation of media publications of youth who have suffered sudden cardiac arrest (SCA). Therefore, the data is merely a hypothesis at best and should not be used as guiding principle.

Although not widely known by the general public, our medical examiners, coroners and those who conduct post mortem examinations are grossly negligent in the identification of specific causality of death, especially surrounding sudden cardiac arrest in youth. Organizations like The National MCH Center for Child Death Review find it very difficult to garner accurate statistical data on causality due to lack of adequately trained and regulated medical examiner professionals. I would argue then that a substantial number of deaths in our children, especially those where cardiac arrest occurred is either not identified or misdiagnosed at point of post mortem examination.

The medical community in the United States lacks resources in the area of pediatric cardiology. The delta between resources that are available and what are needed is an alarming issue. I would argue that those in the practice of pediatric cardiology, if reasonably staffed, would be acting more pro-actively to identify issues prior to a tragic event taking place. Unfortunately, with the laws of supply and demand, resources and expertise required to absorb routine cardiac screenings as part of a well-child examination appears to be out of reach. This is something the medical community needs to remedy by training all cardiologists how to comfortably identify anomalies of the heart, regardless of patient age.

There is a fear that if we screen children for cardiac issues, there may be instances of false positives. As a parent, it would be very upsetting if my child were diagnosed with a false positive. I can understand the inconvenience, consternation and stress it could cause. However, the alternative is one of irrevocability. I would trade a thousand false positives to have my son sitting next to me. Not unlike the false positives that occur in all of medical testing, cardiac screening evaluation will improve as the practice becomes routine and those conducting the screens are adequately trained.

Finally, the readers should understand that the biggest argument against proving pro-active cardiac screens for our children is cost. I can empathize with this argument, however as a parent who lost a child to SCA, I would have foregone a week’s worth of coffee’s or bought the $80 cleats instead of the $125 models to pay for a heart screen. There is a groundswell taking place in this country where community based foundations are driving screening for our kids. With support of progressive physicians and medical professionals we’ve seen evidence where the cost of a pro-active cardiac screen to under $20 per child. In some cases, well under $20. I ask, what is the value of a human life, especially that of a child?

The 9th Ward...

I was sitting in the New Orleans airport a few weeks ago venturing home after the Parent Heart Watch National Conference.  As I sat nearly alone at 6:00 am at the gate, I begin to reflect on the past several weeks and was reminded of how far we've come and how far we've yet to go. I could not help but recall my weekend attending our 3^rd conference with Parent Heart Watch and contemplate about attending our first conference 2 and one-half years earlier.  That first conference, nothing more than emotional haze, attending a mere 6 months after Quinn died.  Knowing today the only way we got through it was the fact we were surrounded by a couple of hundred other parents suffering the same grief.  I recalled how we felt then, paralyzed by grief and unsure how we could ever muster the strength to turn our tragedy into action.

As the calendar tears away months, here I sit, thinking about how far we’ve progressed since that first conference but am reminded of how far we’ve yet to go.  I had the opportunity to speak at this year’s Parent Heart Watch National Conference and tell our story about the Young Champions Heart Screening program.  As proud as I am about the herculean efforts of so many to make the Young Champions Heart Screenings a community success, I could not help but break down during my presentation.  My tears were shed for the recent tragedies in our community- most notably the recent death of Cody Sherrill from sudden cardiac arrest.

Although an honor to speak about the collective determination of a family, foundation, friends and community to protect our kids- I was overcome at the podium by the heartache I knew families right in my backyard were feeling.  Although grateful to speak about our efforts and point to several known “saves” and helping countless families.   The pain of three sudden cardiac arrests in as many weeks in the Vancouver area kept my enthusiasm in check. 

While in my solitude at the gate, I could not help but think about the fact that life draws an endless number parallels.  You know, those situational experiences whereby lessons are learned, some subtle, while others smash you like a ton of bricks.  One of those hit-you-like-a-ton-of-brick parallels played out loud and clear that weekend in New Orleans.  We all know the devastation that took place in New Orleans and the efforts that have taken place to bring this historic city back from almost total ruin. 

On the surface, New Orleans appears to have recovered.  However, if you look a little deeper, you realize the city may never heal from the gaping wounds that were sliced like an axe from Katrina.  A tour of the 9^th Ward and the entire city by a native New Orleans resident (and a friend) proved to be the crowning symbolic analogous life lessons I’ve ever experienced.

Not unlike the efforts of families, foundations and so many others to try and fix our crisis surrounding sudden cardiac arrest in our youth, the residents of New Orleans are trying to repair their loss.  On the surface, we have come a long way in our collective fights and are doing amazing things.  However, if you look just under the surface, we have a long way to go.

Know your family health history, understand the signs and symptoms of potential cardiac issues, ask your physician for a routine cardiac screen, learn CPR and how to administer an AED.

Back in the game...

I’ve been doing a little housekeeping on the QDF site, gearing up for our next Young Champions Heart Screening, trying to keep my head above water by mashing out “to-do’s” to prepare for the onslaught of pre-event preparation tasks.  It’s exciting to think that in such a short period of time, our community has rallied around Quinn’s legacy and we’re ready to conduct our 3^rd public screening event.  Moreover, I’m excited to “get back in the game” and take on, what many consider a public health crisis surrounding the sheer number of sudden cardiac arrests our youths suffer in this country.

Although we’ve been pretty quiet this summer at the QDF, a number of exciting initiatives are shaping up to protect our kids against the silent killer we call SCA.  We had the opportunity to travel to Madison Wisconsin over the summer and present our Young Champions Heart Screening Clinics to a group at the University of Wisconsin Medical School and to a prominent health care cooperative.  From that meeting, I am happy to report that screenings have begun in that community and there appears to be a great sense of momentum on both the medical side and from a very conspicuous national organization.  Words cannot express how grateful I am that another community has adopted the vision and is well on their way to protect their greatest asset, children.

The screening that is taking place on October 8^th is going to be part of a national effort called “Screens Across America”.  The QDF is one of a handful of community based organizations conducting screenings in the month of October to raise awareness on a national basis.  I am proud to say that our community is taking a leadership role in the promotion of cardiac screenings!  A special thanks to all the volunteers, contributors and medical teams who are making this happen.

I encourage all of you to register your kids for a Young Champions Heart Screening or refer a friend or family member for the October 8^th screening.  You can learn more by visiting the Community page on the Quinn Driscoll Foundation site. 

Know your family health history, understand the signs and symptoms of potential cardiac issues, ask your physician for a routine cardiac screen, learn CPR and how to administer an AED. 

-Scott

A Cathartic Post…

When you lose a child, you find out very quickly that you are not alone in your grief. Immediately following Quinn’s sudden death many wonderful people reached out to us and shared their pain of losing a child. One of the first groups to contact us is a national organization called Parent Heart Watch, often referred to as “the best damn organization no-one wants to be a member of”. We were quickly swept up by parent members (that’s official for I lost a child too) of Parent Heart Watch and immediately taken under their wings. We’ve been blessed by their outpouring and now consider many in that organization as friends. Those we’ve met have been instrumental in giving us the motivation and tools to start the Quinn Driscoll Foundation.

Along the way, we’ve met many parents who’ve lost children, each with varying stories; however all share a common bond, grief. We all process grief a little differently. Never experiencing loss of this magnitude in my life, I naturally went into research mode and found reference to a model I studied in college as a Social Welfare major, the Five Stages of Grief (Kubler-Ross Model) http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model. After brushing up on “how I was supposed to feel”, I sat back and waited for the stages of grief to line up in front of me like a buffet of emotions.

The first year and a half after Quinn died was a whirlwind to say the least. Running on nothing but pure adrenaline, I took it upon myself to conquer my emotions and prove that Kubler-Ross had it all wrong. Of the five stages, the buffet was only serving up Acceptance, so with a vengeance I consumed as much of it as I could. As with any buffet, consuming too much of any one thing is probably not a good idea…

I've eaten from that same demonstrative buffet line for two solid years now and my taste for Acceptance is starting to wane. As many fellow parents have advised me, “the second and third years are the worst”. How could that be? Isn't the initial timing around a tragedy the worst part? I’m not feeling anything but Acceptance, maybe I’ll escape the year 2 and 3 blues. Call it naivety, call it wishful thinking, call it denial… I've now come to the realization, grief is not tangible, and it’s definitely not something you can control, never-the-less pick and choose what stages you want to consume in the emotional buffet line.

The past few months have been a real test of my emotional well-being to say the least. Since our fundraising event (a huge success by the way), I’ve been overwhelmed with a sense of helplessness, an anxious buzz that is as powerful as any emotion I’ve ever felt. I find myself (my family and friends catch me doing this) wandering in and out of conversations, thinking about nothing in particular. If I were to describe it, it feels like the pit you get in your stomach right before the biggest final exam you’ve ever taken or like the way you feel when you know you’re going into a difficult situation. Therein lies the rub, you never get to take the exam or take the situation head-on. The feeling becomes a perpetual swirl of angst, an endless buffet line filled with everything you hate.

As with any difficult situation in life, you can fight or you can flee. I choose to fight, I choose to accept the fact that we lose way too many young people in this country from sudden cardiac arrest. I choose to stop trying to make emotions a tangible good and use my grief as a means to help others. Although the pain is often debilitating, I was obligated with a mission, one I did not ask for, but one I will see through.

First Annual Legends Event

Dear Friends,

On behalf of the Quinn Driscoll Foundation Board of Directors I would like to extend a warm and gracious thank you for your support at our first annual Legends event. The evening far exceeded expectations and proved the commitment of our community and extended community in the fight against sudden cardiac arrest in our youth.

Together, we raised nearly $50,000 in total receipts for the event including ticket sales, sponsorships, donations and purchases. After expenses, over $30,000 will be put back into our local area for cardiac screenings, awareness programs and grants for automated external defibrillators (AED). Planning has already begun on granting AED’s and we are busy coordinating a number of community events and beyond.

In June the QDF will be active in assisting at one of Oregon’s largest employers establish an ongoing screening program. In August we will be conducting our 3rd “Young Champions” community based heart clinic. In October the QDF will be one of a handful of foundations participating in a national event, “Screens Across America”. In this first ever national initiative, the Quinn Driscoll Foundation will be raising awareness and conducting screenings at the local level while promoting the need of more extensive cardiac screenings for our youth on a national basis.

However excited about our upcoming year, I would be remiss in not mentioning our namesake Quinn and the thousands of lost legends. In their honor and memory, please remember these important points:

- Understand the symptoms of cardiac issues
- Know your family health history and communicate with your family physician
- Get CPR/AED certified
- Promote routine cardiac screenings in our most valuable assets, our children

Every child deserves to be legend!

A grassroots fight from the trenches…

The past several weeks have been a whirlwind to say the least. First and foremost, we grieve for the families, friends and communities who have lost children to SCA. We took it hard when we learned of a young man who died in Longview WA, a seventeen year old and a father. The young man died while wrestling with friends, HCM the apparent cause. Two weeks later, and less than 100 miles away in Silverton Oregon, another young man dies while competing in a high school wrestling match. Now just days after a community honored a fallen son, we are shaken by another loss in Michigan. The young man in this case died from SCA after hitting a buzzer beater to preserve his team’s perfect season. Then only a day after the Michigan tragedy a young man in Colorado dies while playing rugby. To see it all unfold on ESPN and the national news was more than I could handle.

That brings me to the crux of this post. We are in a battle; family by family, community by community, foundation by foundation and heartbreaking story by heartbreaking story. It’s the axis of change being directed by those who have suffered loss and want to do something about it. Although we are not a unified front, we all share the same battle cry, the same motivation, the same care for our children and the same anguish that puts a pit in your gut that you can’t explain. When we hear the horrible news of another child lost to SCA we all take the hit, we all recall our own personal tragedies, we shed countless tears, we somehow collect enough energy to pull ourselves up by the bootstraps and carry on with our missions.

Our battles are many. Our victories are both monumental and minuscule, measured in terms of “saves” or as simple as telling your story to an 80 year old woman at a community health fair. As warriors we don’t pick our battles or measure ourselves by how many “saves” we’ve had or how many people we talked to. We are warriors for a cause; not for personal gains, notoriety or shiny medals that show how many battles we’ve fought in.

As a grassroots army we count on the strength of our family, friends and community. Without their un-waivered support and amazing dedication to volunteerism we would certainly lose most fights. These unsung heroes are motivated by the sheer desire to make the world a better place, one child at a time. Although it may not be apparent, we are moving mountains together; one screening, one health fair, one community event at a time.

As warriors, we fight because we’ve been ordained to carry out a mission, one we did not ask for, but one we will see through, come hell or high water.