No two children with HLHS are alike. Each of us experience our own roller coaster of ups and downs. Here are the stories of our current board member's heart warriors. Our blogs and Facebook pages are also listed if you would like to learn more about our individual heart journeys.

Aaron

Aaron was prenatally diagnosed with HLHS while his family was living in Northern Montana. With no treatment centers within a safe distance of Montana his family moved back to their home state of Colorado, where Aaron was born in June, 2011. After his Norwood surgery (at 4 days old), Aaron’s recovery and interstage period up through his Glenn (at 4 months old), followed a relatively expected course. Aaron had his Fontan in June, 2014 and while the cardiac surgery went well Aaron experienced an undetermined number of small strokes. With time and therapy Aaron has worked hard to recover many of the skills he lost, and he is thriving in school. Aaron is a sweet, happy boy with a kind, tender and precious heart.

Aly

Aly was diagnosed prenatally in 2009. She has been surgically treated at C.S. Mott Children’s Hospital at the University of Michigan, where the Norwood, Shunt Revision, Hemi-Fontan and Fontan were performed by Dr. Edward Bove. Aly’s Fontan was in March of 2011. She is a happy, healthy, energetic little girl and an inspiration to her family and many others.
 

Bodie

Bodie

Bodie was prenatally diagnosed with HLHS in 2009. Despite a particularly difficult journey to his Glenn surgery, ultimately spending most of the time inpatient and requiring an additional surgery, Bodie is now developmentally on track and thriving. He had his Fontan in August of 2013 and his fenestration closed in May of 2014. All of his surgical care has been performed at Children’s Hospital of Los Angeles. Although pacemaker dependent, he has boundless energy and keeps his family on their toes. He exudes joy, and the Bennett family is so grateful to get to witness his journey.
www.hopeforbabybennett.com

Jake

Jake

Jake was born in 1994, having been prenatally diagnosed with HLHS and Aortic Atresia. He is among the oldest survivors of HLHS. All of his care has been at Boston Children’s Hospital. While Jake has not required any additional cardiac interventions except periodic catheterizations since his Fontan, he has experienced chronic infections and asthma, requiring several hospitalizations.  Jake is an amazing and courageous miracle, and his family feels very blessed that he has not just survived but thrived.

Jonas

Jonas

Born in 2009, Jonas received a post-natal HLHS diagnosis. He was airlifted to Miami Children's Hospital at 13 hours old, where his surgeries were performed by Dr. Redmond Burke. He is post-Fontan as of August 2013, and has the energy level to match! He is a happy, outgoing child who loves to perform. He loves dancing, singing, and playing outside.

www.mynameisjonas09.blogspot.com

Kate

Diagnosed prenatally in 2012, with HLHS, an intact atrial septum and severely leaking Tricuspid valve, Kate had a very tough first year, including 4 open heart surgeries and a brain hemorrhage. But she is beating the odds and is doing fabulous after her Fontan in July 2015. She loves everything outside, especially water play and being with her two brothers. Kate is sassy, smart and determined and has proven that she does not give up. She receives her care at Cardinal Glennon Children's Hospital in St. Louis.

Tyler

Tyler

Tyler was given a post-natal diagnosis and airlifted to Lucile Packard Children’s Hospital hours after birth in 2011. In addition to HLHS, Tyler had an intact atrial septum. Tyler had a feeding tube until 6 months old prior to transitioning to oral feeds. Now surpassing everyone’s expectations after a rough beginning, he is an active boy who loves sports - especially hockey. The family’s goal for Tyler is for him to lead as "normal" a life as possible - allowing him to experience as many fun and wonderful things as he can.  He is treated at Lucile Packard Children's Hospital at Stanford.
www.facebook.com/TeamTylersHeart

Zoe

Zoe

Zoe was prenatally diagnosed with HLHS in 2009. She is one of the youngest to undergo the Norwood procedure at 15 hours old. The hemi-Fontan and Fontan completed her heart reconstruction. While Zoe resides in Arizona, she travels to the Children’s Hospital of Philadelphia for needed interventions and surgeries. Zoe is many things – happy, healthy, witty, and wise – but most of all, she is a constant inspiration to the Lihn family.
www.thelihns.blogspot.com

 

Every child and family we've ever had the pleasure of coming across on this journey has touched our hearts.  This collage is to honor our roots, while looking forward to a future of supporting more families impacted by HLHS.  We are so grateful to the Board members who worked tirelessly to start this organization, those who have joined us since, and the families and donors who have kept us going. You all inspire us!