ABOUT US

About Ellie's Heart Foundation

 

Ellie's Heart Foundation was created in November of 2012 by Geoffrey and Jennifer Ayers, parents of Eleanor Lily Ayers. Eleanor was born on August 2, 2011 and passed away from pediatric cardiomyopathy (heart disease) on April 25, 2012.  The goal in creating Ellie's Heart Foundation was a means to thank the Children's Heart Group at Penn State Hershey Medical Center for the wonderful care that Ellie recieved, in helping them to continue to provide excellent care to the children and families that they serve and to provide and promote awareness of pediatric cardiomyopathy. 

 

You can learn more about Ellie's Heart Foundation and Eleanor Lily Ayers through the Ellie's Heart Foundation Website

www.elliesheartfoundation.org

 

What is Pediatric Cardiomyopathy

 

Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle is abnormally enlarged, thickened and/or stiffened. The condition typically begins in the walls of the heart's lower chambers, and in more severe cases affects the walls of the upper chambers. The actual muscle cells as well as the surrounding tissues of the heart become damaged. Eventually, the weakened heart loses the ability to pump blood effectively and heart failure or irregular heart beats may occur.

 

Cardiomyopathy is non discriminatory in that it can affect any person at any age. However, when it strikes children it is classified as a rare disease. Cardiomyopathy is the leading cause of transplants in children. 

 

There is no cure for cardiomyopathy, and treatment options have not changed much in 30 years. Children with cardiomyopathy often have a healthy looking appearance, much like Ellie did, while being very sick on the inside. Many sudden deaths in healthy appearance young athletes are often determined to be a result of undiagnosed cardiomyopathy. 

 

 

For more informationon all types of pediatric cardiomyopathy please visit The Children's Cardiomyopathy Foundation. www.childrenscardiomyopathyfoundation.org

 

About the Children's Heart Group

 

Penn State Hershey Children's Heart Group is a team of experienced pediatric cardiologists and pediatric and congenital heart surgeons, working together to provide the most advanced health care for patients with congenital and acquired heart disease fromthe smallest newborn, children, teenagers and adults with congenital heart defects within Penn State Milton S. Hershey Children's Hospital. With pediatric cardiologists in every subspecialty, and two expert pediatric cardiovascular surgeons they have experience treating event the rarest of heart defects and conditions. 

About Eleanor Lily

 

Eleanor Lily Ayers was born on August 2, 2011. She was 19 inches long, 6 pounds 13 ounces, and looked very much like her big brother Malcolm. Right before her 4 month mark, Eleanor started exhibiting some cold like symptoms. As she had just entered daycare, her parents thought she was experiencing her first cold. On December 6, 2011, she went to her 4 month well baby visit. A that visits a heart murmur was detected, and after a whirlwind of events, she was sent by helicopter that evening from Williamsport to Hershey Medical Center. The echocardiogram of her heart was so bad that her doctors thought that the wrong CD was sent with her, since they were all amazed she could look as good as she did with how very poorly her heart was functioning. The words transplant were uttered as a worse case senario.  After approximately 2 1/2 weeks, Eleanor had reacted well enough to the course of treatment which made it easier for her heart to function, and she came home just 2 days before her first Christmas. We enjoyed another 4 months with Eleanor at home, before she was flown a second time to Hershey. This time, a transplant was definitely her only option. Eleanor however, had other ideas and she left this world on her own terms and in the loving arms of her parents... We miss her every single day. 

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Call us:

 

717-531-1892

717-531-8674

 

Email us:

camplionheart@gmail.com

Find Us at:

Camp Lion Heart Staff - The Children's Heart Group 

121 N. Nye's Road, Suite D 

Harrisburg, PA 17112