Kids4theCHF- Our heart heroes and the reason we ride!
Magnus- San Francisco (Hypoplastic Left Heart Syndrome)
Magnus has undergone the first two of a series of three surgeries designed to help his heart function without a left ventricle. However, at present, his eligibility for the third surgery is in question as he has developed pulmonary hypertension. His doctors are trying to treat this with medication and by having him on supplemental oxygen 24 hours a … Read Magnus’s full bio
Summer- California (Pulmonary Atresia w/ intact Ventricular Septum)
Summer is an active preschooler and loves her teachers. She enjoys painting, music, singing, listening to stories, and telling her 10 month old baby sister, “no, that’s my toy. Mama, please move Cordelia.” Most people who meet Summer have no idea she was born with a severe heart defect. And for those “in the know” find her to be the most… Read Summer’s full bio
Trevor-Tampa (Truncus Arteriosus, ASD, VSD, Hypo-plastic Arch and Stenosis of LPA)
Trevor was born May 29, 2007 via emergency cesarean section; Trevor was then taken to the NICU for an echocardiogram and EKG. After some testing and a cardiologist was called in, it was apparent that he had a major heart problem.That evening Trevor was transported by ambulance to St. Joseph’s Children’s hospital … Read Trevor’s full bio
Addison- Denver (Hypoplastic Left Heart Syndrome, PAPVR, Tricuspid Valve Regurgitation)
Addison was diagnosed at 18 hours old-in Grand Junction, CO. Then Flight for Life transported her to Denver CO. Where we as a family spent all the holidays, fighting for Addison to live. Addison’s first open heart surgery (Norwood surgery) at 7 Days old was on December 2nd, 2008. Her 2nd op… Read Addison’s full bio
Dominick- New York (Shone’s Complex)
When Dominick was 4 days old, we found out that he had Shone’s Complex. Shone’s Complex is a progressive disease which consists of multiple left side obstructions in the heart. He was transferred from Stonybrook Hospital on Long Island to Mount Sinai Hospital in NYC. He had closed heart surgery at 6 days old and a balloon angioplasty when he was 5 months old. Currently…Read Dominick’s full bio
Ava- New York (Hypoplastic Left Heart Syndrome)
Ava Grace was diagnosed with HLHS at just 19 weeks in utero. Every doctor gave the option of termination and 1 in particular urged it, given the severity of the CHD. It was not an option for us, we had already fallen deeply in love with her and had waited to conceive for over 4 years, she was our miracle and we were going to fight for her. She was born on Dec. 11th 2009. At just 4 days… Read Ava’s full bio
Zachary- Pittsburgh (Hypoplastic Right Heart with Myocardial Sinusoids)
Zachary Hunter Vince was born June 13, 2008 with big green eyes, chubby cheeks and a congenital heart defect. The diagnosis was Hypoplastic Right Heart Syndrome and we were hopeful that with with surgery Zachary could thrive and play ball with his big brother. After Zachary was born it was confirmed that he also had Myocardial Sinusoids and he would … Read Zachary’s full bio
Kennedy- Columbus (Tretalogy of Fallot, Pulmonary Atresia)
My name is Kennedy Mae Clifton. I am 10 years old and I attend 5th grade at Madison Rural Elementary. I like to play softball & basketball. I am also involved in 4H and my school’s Glee club. I live with my dad, mom & 2 older brothers. I was born with Tretology of Fallot. My defects were Pulmonary Atresia & Ventricular Septal Defect. Sometimes it’s tough having this defect… Read Kennedy’s full bio
Cora- Indiana (Pulmonary Vein Stenosis)
Cora Mae McCormick lived for only five days, but she’s managed to accomplish more than most of us. After a healthy pregnancy, Cora died suddenly and unexpectedly while feeding one early morning of an undiagnosed congenital heart defect. In Cora’s short five days, her parents fell madly in love… Read Cora’s full bio
Benjamin- Denver (Hypoplastic Left Heart Syndrome)
Benjamin was diagnosed with HLHS, Atresia of Mitral and Aortic Valves when I was 19 weeks gestation. He had his Norwood surgery at six days old and was in the hospital exactly two months from when he was born. A few days shy of four months old he had his Bi-directional Glenn and about a month shy of his third birthday he had his Fontan. Between these we discovered… Read Ben’s full bio
Aaron- Philadelphia (Atresia, Superior-Inferior Ventricles, DORV, VSD, AV Valve Regurgitation)
Aaron’s complex heart defects were diagnosed at our 20 week ultrasound. The doctors said we were lucky: 25 years ago children with our son’s defect did not survive. But because so many medical advances had been made, our son had a good chance at survival and a happy… Read Aaron’s full bio
Jacob-Bettendorf (Hypoplastic Right Heart Syndrome)
Hi. My name is Jacob Ruchotzke. I am an 18 year old high school senior going to St. Ambrose University this fall. I was born with a congenital heart defect. I have had multiple procedures which includes two open heart surgeries. The final surgery I had was called a full Fontan. Basically, my heart was not able to pump blood to my lungs. A normal system goes: heart-lungs… Read Jacob’s full bio
Aron- Washington D.C. (Hypoplastic Left Heart Syndrome)
We, like all parents-to-be, were looking forward to our first big ultrasound with our third child. After having 2 healthy boys, I can honestly say the thought of any health problems with our third child was but a very small thought in the back of my head. We were super excited to find out we would be having another boy, however the mood changed very quickly when… Read Aron’s full bio
Lily- Philadelphia (Transposition of the Great Arteries)
We learned of our baby’s congenital heart defect at our 20 week ultrasound. Although the remainder of my pregnancy was tainted by anxiety and stress, we were able to prepare for our daughter’s arrival by learning as much as we could about congenital heart defects. Lily Colleen McManus was born on January 4, 2010 at The Children’s Hospital of Philadelphia. Lily was… Read Lily’s full bio
Lucy-Chicago (Tricupsid Atresia)
Lucy was born 7 years ago with a severe congenital heart defect called Tricupsid Atresia. In laymen’s terms, the right side of her heart, that which pumps blood to her lungs, doesn’t function. When Lucy was 5 months old, her first of two open surgeries was performed. She healed well and continued to thrive and develop at a normal rate- something we felt blessed with, as not all CHD babies… Read Lucy’s full bio
Sammy- Omaha (Double Outlet Right Ventricle, Absent Left Pulmonary Artery)
Shawn “Sammy” Smith was born on October 24, 2006. The event was already chaotic and uncertain since Sammy would be arriving at 31 wks with his “womb mates”, Benjamin & Molly. The babies were delivered and whisked away to the NICU. Sammy’s low birth weight of 2lbs and his prematurity caused us all concern… Read Sammy’s full bio
