Monday, January 16, 2012

my Jump Rope for Heart presentation

Last summer another mom from our school asked me to meet with her and our local youth market director from the American Heart Association regarding our school's annual Jump Rope for Heart (JR4H) event.  I tagged along to the meeting, truly clueless as to any input that I might provide the cause, but willing to do what I could to help.

Since then we've found ourselves knee deep in Jump Rope for Heart and I have to say I count myself blessed to be doing it.  The kids are having a ball (or is it a rope??)  actively participating in the planning and prep work, as well.

Last week I met with our PTO to promote our 'new and improved' event and to share why the American Heart Association is near and dear to our hearts (I even created a power point - woohoo fancy!).  I thought I would just document those words here, as well.  I've told the story before here, but I am doing at least one more presentation in the weeks ahead, so I'm counting this as "practice" also, knowing public speaking just isn't my forte!

Here goes:

"My name is Karin and I am the mother of four sweet kiddos:

My oldest are 10 year-old twins, Mr. T and Pookie.  Meiners is 7, and then we have Sashi who is four.

Our twins were born in 2001, and at four days-old, Pookie was diagnosed with a congenital heart defect.  Specifically, the cardiologist called it a 'complete a/v canal,' which basically means she had a giant hole in the middle of her heart where the blue blood mixed with the red blood before it all got pumped out into her body. 

To make a long story short, she truly struggled to survive the first few months of her life.  It was difficult for her to eat because she couldn't coordinate the suck/swallow/breathe pattern newborns use innately.  We needed her to weigh 10 pounds before she could have surgery on her heart, so by the time she was 6 weeks old we were feeding her with a feeding tube in her nose.  Eventually we had one placed directly into her tummy --- she didn't eat by mouth until she was five years-old.  The first four months of her life are kind of a blur, being a new mom - to twins, one healthy, one struggling to survive, but we finally made it to the day we'd been waiting for: open heart surgery.  She was four months old...and the surgery was a huge success!  I remember dancing by her bed in the ICU, so excited that the 'sick chapter' was finally behind us and we could go on with our lives.

Unfortunately, within just a few days, Pookie spiked a fever.  It was determined that methycillin resistant staph bacteria (MRSA - the nasty bug you hear about on the news today) had attacked her heart and eventually it destroyed her perfect repair.  We nearly lost her a number of times after that first open heart surgery.  We watched her become addicted to morphine and live on a ventilator.

But by the grace of God, she survived all of that, and she is now the survivor of 6 open heart surgeries.  She'll be followed by cardiology her entire life - she goes every six months and even had a procedure done in the fall because she was having - in layman's terms - little heart attacks during exercise.  We've sort of taken the year off from PE but she has been allowed to go back this month with strict warnings to rest if she gets tired or feels any sort of chest pain.  She takes medicines every day to keep her blood thin because she has an artificial valve in her heart.  She has to have her blood drawn every month, she can't eat certain foods, and she's banned from sports like gymnastics due to the risk of falls and bleeding.  The great news, though, is that she is doing very well.  She won the spelling bee in her class this week.  She loves to sing and dance and is participating in a very cool song-writing project through St. Louis Children's Hospital.  She's had a bumpy road, but she is truly one of our miracles.

That's our Pookie.

Then, in 2004, we had Meiners, and at 2 weeks-old, he was diagnosed with a congenital heart defect as well - an incomplete a/v canal.

 His story is different than his sister's - he has had only one open heart surgery.  He is our smart, athletic, rascally heart kid,  He'll be followed by cardiology his entire life, also.  But despite his heart defect, he, too, is doing very well.

Most people are unaware that congenital heart defects (CHDs) are the most common birth defect in the world.  In fact, one out of every 100 babies is born with a heart defect.  CHDs are the leading cause of infant death; of the one million children born with a CHD each year, 100,000 of them won't make it to their first birthday.  Twice as many children die each year from CHDs than from all pediatric cancers combined, yet five times more money is given for pediatric cancer research than for CHDs.

My mission - and our family's mission - is to increase awareness of and research for CHD.  We also want to be a light of hope for congenital heart disease.  There are an estimated two million CHD survivors today, and for the first time 50% of those are adults!  We not only want those numbers to improve, I want my two kids to be counted among them!

The American Heart Association (AHA) shares our vision.  Their mission statement is straightforward:  Building healthier lives, free of cardiovascular disease and stroke {CHDs are considered under the 'cardiovascular disease' umbrella}.  Their focus is on educating the public on the importance of heart health through topics as broad as childhood obesity to how to cope with life after a stroke.  They provide us all with help planning exercise routines; they offer delicious heart-healthy recipes; and they teach us how to live longer, healthier lives. 

In 2009, the AHA donated close to $10 million for CHD research.  This positively impacts my family because money donated by the AHA led to the development of the first artificial heart valve.  We look forward to new medicines being developed that will thin Pookie's blood without requiring frequent blood draws;  and we also anticipate procedures that will allow her valve to be replaced through a simple catheterization procedure instead of invasive open heart surgery - which doctors are already doing in some cases!  These advancements may be on the horizon with additional research!  We look forward to improved quality of life for our kids and for all our heart friends!

Our school has been invited to share in fundraising efforts for the AHA.  This year we are super excited to bring a new and improved Jump Rope for Heart to our school.  We began in January already with a Heart Health Awareness essay contest.  Then on January 20th, we are honored to host the amazing skills of of the ShowMe Jumpers!  All of this hoopla culminates in an exciting school-wide Jump Rope for Heart event on - what our family calls "Healthy Heart Day" - otherwise known as Valentine's Day, February 14th.  AND if students raise $3000, our principal has agreed to let them duct tape him to the gymnasium wall!

Heart issues affect us all.  Nearly 2,200 Americans die from cardiovascular disease each day.  That is one person every 39 seconds.  Heart attacks and strokes takes more lives each year than cancer, chronic respiratory diseases, and accidents combined.  They are also the number one cause of death in women.  So, we wholeheartedly invite you to join us in raising money for the American Heart Association.

Thank you so much for listening and allowing me to come and speak to you!"

**Would you consider helping us reach our goal of increased awareness of and research for healthy hearts?  You can visit our family's fundraising page here.

All the amazing statistics quoted in this post came from the following websites:,9171,1004724,00.html
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