I'm going to speak to you from atop my soapbox today. I promise to keep it short. If you have absolutely no concern for the welfare of children with special medical needs, feel free to skip this post.
If you have read my blog before, you know that I am the mother of two children born with congenital heart defects. Li'l Angel's combination of defects were incompatible with life, so she only lived on this earth for a year. Superkid is six years old, and lives and thrives today thanks to a prosthetic mitral valve, a blood thinning medication, our beloved team of medical providers, and many miracles.
Although many children--like my Superkid--now undergo successful heart repair surgeries, most will require special life-long care and face high risks of developing additional heart problems. Up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
One adult CHD survivor is Paul Cardall, a talented musician living in Salt Lake City, Utah. Paul is a husaband and father who recently received a life-saving heart transplant at Primary Children's Hospital. Paul is also the author of an inspiring blog, Living for Eden, and has become an activist in raising awareness about CHD and those who are affected by the #1 Birth Defect. Today he posted information regarding his efforts to educate our country's lawmakers about a new bill coming before the Senate and House, The Congenital Futures Act.
Paul Cardall meeting with Utah Senator Orrin Hatch.
Thanks to Paul for his courage and efforts to bring understanding to this overlooked issue.
You can help families living with CHD by voicing your support for this bill to your own senators and state representatives. By visiting the Adult Congenital Heart Association website, I was able to find the contact information for my own representatives and jet off emails to the three of them (there is a handy sample letter you can use to create yours) in less than thirty minutes. I strongly encourage you to do the same.
Please, please, help to provide a brighter future for the millions of children in America who are living with heart disease. The risk factor for CHDs in any pregnancy is that 1/100 pregancies will result in a baby with a congenital heart defect. With statistics that high, it is likely that if you aren't already the parent, grandparent, sibling, aunt, uncle, cousin, or friend of someone who has a congenital heart defect, then you will be someday. I urge you to take a few minutes to voice your support to your legislators to improve the lives of children and adults with CHD.