When I was 31 weeks pregnant, my unborn daughter was diagnosed with a severe Congenital Heart Defect called Hypoplastic Left Heart Syndrome (HLHS). We walked in to the ultrasound hoping for some cute pictures of our child and walked out with a devastating diagnosis. We were told by the doctors, “Don’t use the internet- you will find outdated and inaccurate information about this condition.” And they were right. We went right home and searched online and the first websites we found were websites set up in memory of children who had lost their lives to this horrible defect. I kept searching trying to find some hope and slowly, began discovering other families out there who were doing the same. I started making some great friends who were either expecting their HLHS baby or had a young child living with it. About a year and a half into our journey with our daughter, I got an email from a Heart Mom friend I had met online. She had been inspired by something an expectant HLHS mom had written on her blog. This mom had found herself crying in the middle of Target because she had no idea what to buy to prepare for a baby that she didn’t know would ever come home from the hospital. Through this, Sisters by Heart was born.
Sisters by Heart is a non-profit organization started by 10 Heart Moms from across the country with one thing in common- a child who was born with Hypoplastic Left Heart Syndrome. Our mission it to support newly diagnosed HLHS families…one precious heart at a time. We offer families carefully designed care packages, full of items that are helpful for their hospital stay and more importantly, we offer them hope. We have created a nationwide network of HLHS families called Linked by Heart to help connect families locally. We offer the support that we so desperately searched for when our children were diagnosed. Since our inception two years ago we have sent out over 400 care packages and connected man, many more.
Our care packages started out being funded by us- the 10 moms who started Sisters by Heart. Over the last two years we have been blessed to have received countless donations, monetary and supplies, to help us continue to offer the care packages. This year we are starting a national fundraising event called Ladies Night Out and are holding the inaugural event in MidMichigan. We have put together a fun night that will be full of shopping, free food, free drinks, door prizes and entertainment. This event is being held on February 22 at the Midland Country Club in Midland, Michigan. We have over 20 vendors, including Circle Quality Shoes and Captured Photography, and Kathie Dice, a highly requested comedian from Cleveland, Ohio for our entertainment. Tickets for the event are $50 and are available online at www.sistersbyheart.org or at the door.
If you have any questions, please contact us at [email protected]
By: Jenny – Heart Mom