"This group has become a second family for me, my child has made friends that he feels connected to in a way that no other friendship can offer. The support system of this group is like nothing I have ever had,in matters of the Heart or matters of daily life this group has been here for me time and time again and I would be lost without it." - Dorothy from New Jersey
"This group has helped me understand the little things associated with my daughters heart condition. It has helped me feel less isolated knowing their are other families going through the same emotions and surgeries and facing the same on going issues. It brings comfort and knowledge to an otherwise stressed out, scared parent who has found the support needed to continue on the journey of having a child with a hrh." - Debbie from Australia
"In the sea of HRH one feels extremely isolated. As if you are on a boat alone without a motor. Having this group literally at my fingertips I not only am on a cruise liner with some really fantastic people but I have a life jacket that makes me feel secure...I know we are not alone." - Melissa from Colorado
"I found my voice with this group. I'm not afraid to question doctors about the choices they make for Megan. I also feel like this group is my "go to" when no one gets "it" I Can come here and everyone does. It's a sense of belonging...after all we are rare and unique even in a rare and unique world.
Thanks to Amanda for starting this group and thanks to everyone here...this is my heart family!!" - Kimberly from California
"When I first found out that I was pregnant with a child who has HRHS, I was terrified. I thought that Chloe was destined to have a life that would be ended WAY too soon. The women here helped me to understand that it's ok. Chloe is a fighter. Everyone here welcomed me with open arms and were more than willing to answer any questions that I had. Better than the doctors could, the majority of the time. In a way, this group saved me and Chloe. This group has been a place where I can come to vent, ask questions, and know that there are others like Chloe and I out there. I honestly can not thank every one enough for what they've done for us. Thanks again!!!" - Brittany
"I cannot accurately describe the isolation you feel when you are informed your child has a life threatening CHD. Even worse is when the CHD is a rather uncommon one; information is very difficult to find and your sense of isolation can be overwhelming. My husband and I were active duty Air Force when I was pregnant with my daughter and he was deployed when I was given the diagnosis of a CHD. Being military, we are geographically separated from family and friends are few and far between when you move every couple of years. The Hypoplastic Right Hearts support group was my lifeline. This group has become my family; my heart family. I continuously turn to other heart parents for advice, shared experiences and often a shoulder to cry on. As a very popular commercial would state, having this group; priceless." - Suzanne from Maryland
"This group has given me knowledge and hope. I have become a better parent to my son because of this. I would have drowned in a sea of hopelessness if I had not found others with children like mine. And then to see how they have gone before me and the success. And then there is the gift to give back to those who follow behind. Amanda and Co are a blessing to me and my family." - Dico, California
"Our HRH group has helped me to realize that my daughter does have a fighting chance against this awful disease. My job as Melia's mother is to educate myself about CHD and to support her in her journey. I don't see how I could do either without this support group." - Karen, North Carolina
"We felt so hopeless and helpless when we found out about our daughter's heart. Internet searches depressed us, as many of the information was outdated and extremely dismal. I was a member of a regular baby board and felt so out of place with the other mommies who were carrying perfectly healthy children. I posted and was directed to this group. We have truly found a family here... a worldwide, knowledgeable, supportive family that has helped us to understand what it is to hope, to wait, and to cherish the times with our daughter. When no one else was there to offer words of encouragement even at the smallest things, the HRHS group helped us through it and we continue to look forward to sharing our child's life with these amazing people and hearing how their families are dealing with living with a CHD." - Rachel, Missouri