Saturday, June 23, 2012
It's a Heart Matter
We've been preparing for the Congenital Heart Walk of Pittsburgh. The walk was today and over 500 walkers came and raised over $55,000.00 for Congenital Heart defects. Our Mended Little Hearts team raised over $10,000.00 and had over 100 walkers! (AMAZING!)
Why we walk:
CHD (Congenital Heart Defect) is the #1 Birth Defect.
It affects 35,000-40,000 babies born every year
And CHD is Grossly under funded. (Advocates like the Adult Congenital Heart Association and Mended Little Hearts are trying to change this!)
The Children's Heart Foundation provides research grants to the brilliant minds out there who are finding answers and cures. Money that is critical to their success. We need more research and more research money to save more lives!
Advocating and Raising Awareness is vital to CHD's! Again....Raising awareness and advocating saves lives! And raises more money...which saves more lives!
Today was all about raising money for those 3 National organizations. EVERY SINGLE DOLLAR goes straight to CHD's. Every dollar raised will directly impact our CHD Warriors.
My Clan with Dr. Stephen Cook
Did you know that as children with CHD's grow into adulthood it's imperative they are followed with their Cardiac care by a doctor who specializes in Adult Congenital Heart Defects? Their hearts are NOT like "typical hearts" and a typical Cardiac doctor won't be able to provide the best care! Dr. Cook is the Children's Hospital of Pittsburgh's Adult Congenital Heart Specialist.
My Heart Warrior, Little Baer (Who btw....looks pretty darn irritated at me in this picture. haha)
He was born with an AtrialVentricular Septal Defect. (A hole in the Center wall (Septum) of the heart which encompasses all 4 chambers.) His repair was done at 3 months old. He still has a subaortic membrane, which is causing subaortic stenosis. He will require another open heart surgery, at some point. 6 mths? 1 year? 2 years? The timeline is unknown. A lot of the CHD world is unknown. It's all about waiting and patience. And faith and prayer.
My Big girls:
Always there to support us in our journey is Goldilocks and her girlfriend (Which...btw has no name. she needs a name....I have the 3 baers and momma baer and papa baer and Goldilocks. She can't be the big bad wolf..cause she's just to sweet. haha) They donated an autographed Penguins hockey puck of theirs to raise money for the walk! How cool is that?
My dear friend Patty. She runs the Children's Heart Foundation, PA Chapter.
I must say, Patty has been an amazing friend. I specifically remember her reaching out to me during a hard period for me and asking if I was ok, only because she knew me and knew I wasn't alright at the time. I love her! Her dedication inspires me! I wish we didn't live on the opposite ends of a huge state. :)
Laura and I! Laura is a Cardiac Social worker and is one of my very first contacts with Children's Hospital. She has been such a supporter and friend through our process of building our group here. We laughed and shared how it was so nice to see each other "out of work" when we had some time to chat.
Me and "She who is yet to be named" acting silly!
Oh Baby Baer is finally growing some hair. Now if we could control it!
Mama Baer and Goldilocks. I love this girl! she really has become an amazing woman and I'm so proud of her!
She has had a lot on her shoulders as a big sister through this journey. She has shared the CICU waiting room with me, stayed at the hospital with me, helped me hold her baby brother while the nurse.s poked and prodded him. (Even though she HATES blood and drool haha) And even braves all the events with us (Even though there are always clowns.) She learned all about the medical stuff she needed to know (And a lot she didn't)
CHD's don't affect just one person. for every little heart that is born with a CHD there are moms, dads, sisters, brothers, grandparents, friends, and so many others.
All of these people came out today to support, donate, walk, raise awareness, and enjoy their day with friends. Families they have met along the way who are just like their family now.
We are all out there trying to do what we can to Save lives!
When we chartered our group in October 2009, I had no idea where it would lead us. We really had 10 people....who made up EVERY.SINGLE.PERSON we knew that knew about CHD's. And finding those 10 people was tough. Now we are a part of this massive "family" of hearts.
To find out Information on the 3 AWESOME organizations you can go here:
and a few others from today that you might be interested in!
Our super great friend Danielle over at Jameson's Army