Archive for April, 2009

Little Miracles Abound

Monday, April 13th, 2009

Hi everyone,

We trust you are as eager for warmer weather as we are! Despite the unpredictable weather, we’ve had the distinct pleasure in meeting some wonderful kiddos and families recently. What we’ve learned is that we’re not alone in the world. The more people we meet the more we learn of tales of bravery from little miracles. The commonality does not belittle the struggles our families endure. These struggles are not finite. They are life-changing, sometimes life-long sagas that are often emotional rollercoaster’s with huge hair-pin turns of post trauma stress. When we meet these families we are amazed how they’ve been able to ride the same ride as us…and they’re trying their best to make something good out of it all.

If you find a path with no obstacles, it probably doesn’t lead anywhere -Frank A Clark

Cooper: he’s a sweet and energetic little man. We came into contact with his parents during our trials back in October. They found us and they gave us support. Cooper Cause is growing and its mission is to “help heart pediatric heart patients, one family at a time”. We had the privilege of participating in their recent Bowl-A-Thon fundraising event in Lawrence on April 5th. It was a true pleasure to meet the Keefer family and to witness Cooper’s strength. The many people in attendance were a testament to the love and support surrounding this family. Read more about their mission here:

Conner: his time here was brief, but his impact was huge. He brought many people together, helped rekindle relationships and taught us all about how precious and delicate life really is. Conner’s young parents were treated to a Chili Feed Fundraiser last weekend on April 11th, which we attended. It was amazing seeing such a good turnout and the weather was perfect for the occasion. Conner’s parents have been amazing throughout this ordeal and they should be applauded for being so wonderful. You can read about Conner on his Caring Bridge site: He’s a true little Angel.

Rainy: a very special little girl. Born Rainbow, she’s definitely the result of sunshine on rain. She’s got the heart of an Angel, the poise of a Princess and the strength of many. She’s another great Warrior Princess! She’s endured more in her life than a room full of people. More operations that I care to mention and her battles are far from over. She’s recently hit some “rainy” spots in her life and her endurance is a testament and a reflection of the spirit in her family. Her parents have iron wills and do their best to care for their children. We’re simply amazed at their ability to weather the long list of painful complications Rainy has endured. Read about this amazing girl here:

What’s the connection? While doing a random search for an old friend in January, I came across a newspaper article about a fundraiser for the Children’s Miracle Network. In the story, I read about Rainy and her family. After contacting them to buy some bracelets, I learned that they knew a young couple who was going to be having a baby boy soon with heart conditions like Isabelle. We had the privilege of talking with this family before the baby was born. Our mission was to give hope and to try to calm some nerves. The baby was Conner! It’s a small world…or is it? I think it’s a big world and sometimes, people are meant to meet people. We are so glad to have these new friends and we plan to work with them to raise awareness about Congenital Heart Disease and raise funds for noble causes. We all have lofty dreams about helping every sick child, but with your help, we can begin to make a difference.

Thanks for letting me share these stories with you.

Warmest regards, Chris, Amanda, ^Isabelle^ and Elorah

New Legislation - Need Your Help

Monday, April 6th, 2009

Hello everyone!

There is a new piece of legislation entering Congress that will bring much needed focus and assistance to the world of Congenital Heart Disease (CHD). It is called “The Congenital Heart Futures Act”.

The goal of the Act is to coordinate Federal Congenital Heart Disease Research efforts and to improve Public Education and Awareness of CHD. It was introduced on March 17th, 2009 and desperately needs your support!

CHD has been struggling to find a national audience and attention. CHD’s affect nearly 1 in 100 babies and is the leading birth defect in our nation. Isabelle’s condition was rare and treatments for her condition have only been available for the past 20 years. Federal funding and research is needed to help the fight against CHD and help find better treatments.

Here’s how you can help:

1. Visit this site to learn more about the Act:

2. Write a letter to your congressman/woman and let them know your support of this Act. (the sooner, the better)

3. Pass this on to as many people as you can. Get the word out!

4. Let us know you’ve helped our cause (send us an email or post on our guestbook). We’d love to hear from you!

Big heart hugs from us!

Chris, Amanda, ^Isabelle^ and Elorah