| Watch Evan's Story You can read Evan's story and visit his website by clicking on "Evan's Page." His website also has links to information on his conditions. Evan was born with DiGeorge Syndrome which caused a Congenital Heart Defect known as Tetralogy of Fallot with Pulmonary Atresia. He endured many surgeries and procedures throughout his 7 months but lived an incredibly warm and loving life. He is an amazing little angel. |
| Bringing Awareness to Congenital Heart Disease |
| *Congenital Heart Defects (CHD) are America’s number one birth defect. Almost one out of every 100 babies is born with a CHD. *CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths. *More than 91,000 life years are lost each year in the United States because of CHDs. *More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life! *CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined. *The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only one penny goes toward pediatric cardiology for CHD. *Similarly, for every dollar provided by the National Institute of Health, only one penny is allocated toward pediatric research. This means that only a fraction of that one penny will be directed towards CHD research. *Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood. |
| View Evan's memorial page on the American Heart Association's website |
| FACTS ABOUT CHD (Taken from the Children's Heart Foundation website) |
| The ducks on the quilt block represent Evan's favorite toy, Duckie. He smiled each and every time we would play with Duckie. The binky on the left represents his big, green, round SOOTHIE binky that he also loved so much. |
| The Congenital Heart Defect Awareness Quilt Project was created to promote greater public awareness of Congenital Heart Defects (CHD), while honoring the strength, courage, and commitment of all those born with a CHD and their families. The Congenital Heart Defect Awareness Quilts are a series of quilts, with each quilt honoring 42 individuals with CHD. The quilts are being constructed of heart blocks, with each block being dedicated to a child or adult effected by Congenital Heart Defects. To have a block dedicated and included in the CHD Awareness Quilts see our block registration page. Click on the logo above for more information. |