Heroes

Katerina, HLHS

Katerina was born with a condition called Hypoplastic Left Heart Syndrome (HLHS), the most severe heart defect a person can have. The left side of her heart never developed in utero and she was born with only half a functioning heart. She has undergone over 6 surgeries, 4 of them open heart surgeries! She is a hero in every sense of the word. They say a honeybee shouldn't be able to fly because it's body size and wing dimensions are aerodynamically incapable of flight - Katerina, too, has soared to incredible heights despite having only half a heart.

She says she wants to "fix" hearts when she grows up and pretends to be a doctor every day - we can't wait to watch her change the world. She inspires everyone around her with her bravery, strength, indomitable spirit and very special heart.

AnnaSophia,

VSD, ASD, Bicuspid Aortic Valve, IAA, Heart Transplant Recipient

2024 Cure Award Recipient


AnnaSophia was diagnosed at 9 days of age and underwent open heart surgery to correct her
Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD), and Interrupted Aortic Arch (IAA),
but she had to wait until young adulthood to repair the bicuspid aortic valve. She developed
junctional ectopic tachycardia (JET), and was diagnosed with congestive heart failure and
pulmonary hypertension shortly after. At 5 months of age she was at risk of sudden cardiac
death and was listed for a heart transplant. At 6 months old, she was only the second baby at
Children’s Hospital Colorado to receive an ABO Incompatible Heart Transplant. She’s the only
transplant recipient we know to have her original IAA defect and a heart transplant.


AnnaSophia has struggled immensely with side effects of immunosuppression and was recently
diagnosed with Transplant Coronary Artery Disease. She continues to fight to live daily and has
aspirations to enter the field of medical research to help find a cure.

Beckett, HLHS

Beckett was was diagnosed prenatally, so he was able to be treated right away.  At 2 days old, Beckett underwent his first open heart surgery.  He handled the surgery well, but it was discovered that he had small pulmonary arteries which complicated his recovery.  He had a rough 4 months following which included 3 more hospital stays and 3 cardiac cath procedures.  Beckett had his second open heart surgery at 5 months old.  Beckett spent a total of 145 days in the hospital.  

Since he’s been home, Beckett continues to recover, grow and develop like crazy.  He’s just turned 1 year old and is the happiest baby in the world.  You wouldn’t even know he has a heart defect.  He’s already our hero and we can’t wait to see what amazing things he’ll do! 

Allanah, AVCD

Allanah was born a seemingly healthy baby girl weighing 7lbs 8oz. After going home, her mom noticed that her lips and fingernails looked a little blue and she seemed to be working very hard during feedings. At the 2 week check-up her mom reported what she had noticed and the paediatrician noticed that she had not gained weight, but had actually lost weight during her first 2 weeks of life. The paediatrician recommended she see a cardiologist and it was during this visit that Allanah was diagnosed with Atrioventricular Canal Defect.

At four months old Allanah had open heart surgery, after 9 hours the surgeon came out and said everything looked great. Allanah is now 23 years old. She is pursuing her dreams and living a healthy life.

Andrew, TOF

Andrew was diagnosed 24 hours after birth with Tetralogy of Fallot (TOF), a four part complex congenital heart defect. Andrew would need multiple surgical procedures to correct various holes and a stenos pulmonary valve and at 6 months old, Andrew underwent open heart surgery. Andrew's condition typically requires a new pulmonary valve every 3-5 years, however 16 years later, Andrew still has his first valve! This young man leads a very healthy, restriction free lifestyle and is blessed to have avoided further surgeries up to this point. Andrew knows that his heart is a muscle and he exercises that muscle every day. While he will eventually need a new valve, Andrew keeps his heart strong by competing in high school athletics, Olympic weight lifting and Basketball.

Andrew's story is one that defies all odds, a story of complex CHD that pushes a young man to be the healthiest version of himself, but does not define him.