This year we walk for Ellie’s Legacy – A Legacy filled with love, laughter, and rainbows. Ellie, age 7, passed away in May 2025. She was born with multiple congenital heart defects, including Hyperplastic Left Heart Syndrome (HLHS), Dextrocardia, Pulmonary Atresia, and an Unbalanced AV Canal. She spent her first nine months in the Cardiac Intensive Care Unit, at the Children's Hospital of Philadelphia. Due to her complex defects, she was not eligible for the typical care path of children born with HLHS, and before she turned 1 she was placed into Palliative Care – there was no safe surgical path for her at that time and we managed her symptoms focusing on her growing and thriving.
Before coming home Ellie experienced her first stroke. She had diminished weakness in the left side of her body and her future was again unknown to us. During a routine heart catheterization, Ellie suffered her second stroke leaving her partially blind and we believe caused the loss of hearing in her right ear. Eleanour was truly a medical miracle – nothing stopped her from living a full life. She attended her local elementary school and participated in basically everything her peers did.
One of the biggest changes in Ellie’s life was in October 2022 when she gained the title of big sister. Even though the chances of having another child with a congenital heart defect were very slim, Ellie’s sister Maddison was born with two CHDS, a Vascular Ring Defect and a Patent Foramen Ovale. Thankfully to date Maddison has not needed any cardiac interventions and is just followed by cardiology with the Children’s Hospital of Philadelphia.
In 2023, shortly after returning from her Make A Wish trip to Disney World (her favorite place on Earth) and days after her last walk with the Children’s Heart Foundation – Eleanour developed an infection in her heart called endocarditis – which caused little clot like bits of infection to travel to her brain. This caused multiple mini stroke like occurrences. It seemed like our worst setback yet, however after a month in the Pediatric Intensive Care Unit and a month at the Seashore Rehab House at the CHOP, Eleanour was basically back to her baseline. She only missed a month of school at the end of Kindergarten and transitioned up to first grade with her teacher and classmates.
Unfortunately, in May 2025, Ellie passed suddenly because of her cardiac defects. We are thankful it was painless and in the arms of someone she dearly loved.
Eleanour Kristine continues to live in the hearts of everyone who loved her. Her legacy is one of love and laughter. Her infectious laughter and smile still live one in our hearts, and we see her in every rainbow. Our team goal is to raise $7,000 dollars to continue to help research and understand Congenital Heart Defects. In remembrance of the seven amazing years that Ellie graced this earth. It is because of the amazing work of the Children’s Heart Foundation that children like Ellie are born and survive every day. 1 in 110 of children born each year will have a congenital heart defect, and unfortunately 25% of them will need surgery or other cardiac interventions in the first year of life.
In Memory of Ellie and in Honor of Maddison help us spread Ellie’s Legacy of Love threw the amazing work that that Children’s Heart Foundation does.