“Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion. Clear-eyed, hope gives us courage to confront our circumstances and the capacity to surmount them.”
Jerome E. Groopman, The Anatomy of Hope
Our families first met in a small office in the Department of Cardiology at Children’s Hospital Boston in January of 2005. Dan and Brita Dietzel were in Boston after their birth of their daughter, Ellianna, who was born a few days prior. Jessica and Erik Lindberg had just finished a long day of meetings with doctors and undergoing tests in preparation for the Fetal Cardiac Intervention scheduled for the following day. Our families shared stories and also gratitude for the fetal cardiac intervention option. We exchanged e-mail addresses and have never been out of touch since. Our meeting became a friendship that grew through the years: through surgeries and shared hospital stays in Boston, doctor’s appointments, feeding issues, hopes, wonders, the loss of Ellie and beyond. We spoke many times of starting a foundation like this. Since we both traveled great distances to be in Boston, we knew the strain and stress the travel brought. We also knew that there was no other place we’d rather take our children. We had no idea that it would be the loss of our Ellie that would propel our idea into reality.
Our experience tells us that there is HOPE for children diagnosed with Hypo Plastic Left and Right Heart Syndromes. This HOPE came to our families through Boston and through the friendship we’ve formed. We are so thankful to all the families who have gone before us and had the courage to agree to those first surgeries for HLHS/HRHS. We are thankful to the doctors and medical staff who have perfected this palliative care and we stand with those who believe we can perhaps reverse HLHS/HRHS or make it less severe by intervening in utero.
We are thankful to the many Fetal Cardiac Intervention Families, Friends, Advisors and The Fetal Cardiac Intervention Team at Children’s Hospital Boston and Brigham and Women’s Hospital for their incredible support. Our dedicated supporters and many generous donors give us confidence and HOPE our work will do great things.
Thank you for learning more about the Ellianna Grace Foundation. Your support and generosity allow our work to continue.