As a mom of a child with DS who had a heart defect but is thankfully doing much better, my heart goes out to you and your family.

I think it's wonderful that you are doing this as well. My infant daughter passed away from a heart defect.

I'm so sorry for your loss. How wonderful that your doing this to help others. Good luck!

Anonymous wrote:Thank you for sharing this information. I'll visit the website. I'm the very fortunate parent of a heart baby who spent the first week of his life in Children's CICU. Sorry for the loss of your daughter, and so wonderful of you to support other families whose children have Down syndrome and/or heart defects.

Thank you for leaving your comment. It's always so nice to hear success stories. Parents who have been through it really get it! We are so fortunate to have the support of so many wonderful people!

Thank you for sharing this information. I'll visit the website. I'm the very fortunate parent of a heart baby who spent the first week of his life in Children's CICU. Sorry for the loss of your daughter, and so wonderful of you to support other families whose children have Down syndrome and/or heart defects.

Hello!

I wanted to get the word out about an event for our late daughter who was born with Down syndrome and a heart defect. She died after complications from heart surgery almost two years ago. In her honor we have establish an annual event called Mamie's Mile. This year proceeds from our walk will benefit The National Down Syndrome Society. We would love to have more families from the Down syndrome community attend.

Last year proceeds went to the cardiac intensive care unit at Children's National Medical Center.

The walk is on Saturday, May 19th. If you would like to join us, please see www.MamiesMile.org for more details.

We hope to see you on May 19th!!!