I am supporting the Courage Classic and Cardiac Climbers for patients like Ellie. Here is her story...
"Isabel “Ellie” Hecker was born on July 15, 2003 at St. Joseph’s Hospital in Denver, Colorado. As soon as the delivery was complete, we knew there was something special happening. Ellie was born with a chromosol disorder called CHARGE syndrome and the “H” in CHARGE stands for Heart Disease. In Ellie’s case, she had a handful of heart conditions but the one condition that seemed to garnish the most attention was Ebstein's anomaly. While mom was recovering from delivery, Dr. Michael Schaffer, Cardiologist at The Children’s Hospital of Colorado, visited her in her hospital room and explained the condition and in that room started the very long and difficult road in which we continue to travel.
At the age of five, it was decided to close the open PDA and six weeks later, the ASD. For Ellie, life began to normalize. She attended a neurotypical school for students with a hearing loss (the letter “E” in CHARGE stands for ear deformities and hearing loss) and had the stamina to attend with almost perfect attendance for seven years of elementary school. Ellie enjoyed activities such as Music Together groups, baseball, soccer, gymnastics, and Girl Scouts. She developed friendships, enjoyed play dates and sleep overs.
Middle School and High School were equally uneventful from a cardiac standpoint. Dr. Schaffer always welcomed our visits by stating, “This is my most hated heart disease of all heart diseases. If I could eradicate one condition of the heart, this would be it, because there is no good fix.” Having had years, decades of hearing this message, we always knew surgery would be eminent but worried about the looming issues of a mechanical valve and “no good fix” came at us like a dark storm cloud way off in the distance.
Once Ellie turned 17, looking to graduate High School, our care was transitioned to the Adult Congenital Team at The Children’s Hospital of Colorado and we met Dr. Roni Jacobsen. Dr. Jacobsen ordered some new tests and discussed Ellie’s condition with her team and the dreaded surgery was recommended. Due to a few extra heart conditions that accompanied her Ebstein’s anomaly it was decided the surgeon with the most experience was Dr. Joseph Dearani at the famed Mayo Clinic in Rochester, MN.
May 13, 2024, Ellie underwent a successful cone repair of her Ebstein’s anomaly and a Warden procedure to fix anomalous pulmonary veins. It has been approximately 4 weeks since surgery and Ellie is recovering amazingly well. She has resumed going to her social activities, continues to attend college, and work part time. Her recovery has been remarkably seamless with the help of Dr. Jacobsen. We are very lucky to have had the care provided by her providers. Ellie looks forward to decades of life with a rebuilt heart."
Ellie's perseverance and positive attitude has been a motivation to me. I will be riding as a member of the Cardiac Climbers Team to help raise money to provide care for children, adolescents, and adults like Ellie who are living each day with congenital heart disease. The Courage Classic is not only a personal challenge, but also an opportunity to support positive outcomes and healthier futures for patients with congenital heart disease.
Thanks so much for your support!
Roni
