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Our Kids
Today, Ethan is 3 years old and doing great. He has had his struggles and still sees doctors and therapists to help him with his needs and delays. Overall, he is just a 3 year old little boy who loves to play, run, climb and spend time with his dog Zoe. His smile is contagious and his spirit is strong. We are eternally grateful for Ethan and for this journey. We are better people because our life has been blessed by our special boy.
Our Mission
Ellianna Grace Foundation
The Ellianna Grace Foundation was established in memory of our precious angel, Ellianna. Ellie was a light of hope to many families and doctors by the way she excelled medically after a pioneering treatment for Hypo Plastic Left Heart Syndrome (HLHS) and by the way she took on her life with happiness and courage. In her honor, this 501c3 foundation was established to keep her light of HOPE growing and to nurture this hope in the lives of those touched by congenital heart defects.
Our Mission
Our mission is to support Children’s Hospital Boston and Brigham and Women’s Hospital’s Fetal Intervention Program as they look for ways to prevent and treat complex congenital heart defects by helping families with financial resources needed to participate in the fetal intervention program, and allow families to return to Boston for their baby’s birth and subsequent surgeries if necessary or desirable.
Our Philosophy
We believe that each child’s life is special and unique. We believe that children with congenital heart disease deserve the best care possible. We make it our life’s work to support institutions that research and put into practice ways to diagnose, treat, and prevent single ventricle congenital heart defects. We seek to bring HOPE to families facing this difficult diagnosis and we commit to helping our communities be places where these families find support and where their children thrive.
Why Boston and Why the Fetal Intervention Program?
Historically, children born with single ventricle heart defects have had very challenging beginnings and lives. It's only in the last few decades that doctors have perfected palliative surgeries to help these children live and thrive. While great strides have been made, the future is unknown for many of these children. Children's Hospital Boston, in conjunction with Brigham and Woman's Hospital, has pioneered a fetal intervention program that seeks to interrupt the progress of both hypoplastic left and right heart syndromes by dilating narrowed heart valves in-utero. These valve dilations allow for increased blood flow to the defective ventricles to promote ventricular growth. Some children post-procedure have been born with two ventricle hearts and have not needed the palliative surgeries at birth. Others still need the palliative surgeries, but their defective ventricle is able to contribute to their circulation. Currently Children's Hospital Boston, in conjunction with its neighboring Brigham & Women's Hospital, are the only hospitals in the country offering this procedure with measurable and successful results. This program and the team involved in this program have given great HOPE to many families. In turn, it is our hope that the future may be changed and brightened for children facing single ventricle defects.
For more information on the Fetal Intervention Program please contact the Advanced Fetal Care Center at Children’s Hospital Boston: 1.866.fetalcare or 617.355.3896.
For articles related to the Fetal Intervention Program please click here.