About Us

In January of 2005 just days after Ellie’s birth in Boston, Dan and I met Jessica and Erik Lindberg.  They had traveled to Boston from Chicago for a fetal intervention and requested meeting a family who had already undergone one.  Our first meeting was in a small office in the department of cardiology at Children’s Hospital Boston.  We shared stories and told them how thankful we were for the option of the fetal intervention.  Theirs was scheduled for the following morning.  We exchanged e-mail addresses that day 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, our loss of Ellie and beyond.  Jessica and I always spoke 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 the idea into reality. 

Our experience tells us that there is HOPE for children diagnosed with Hypo Plastic Left Heart Syndrome.  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.  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 or make it less severe by intervening inutero.  We look for a day when children with HLHS are better off than ours.  Then we’ll know that we’ve played a small part in creating a better future these special children.

We have been joined on our foundation board, not only by Jessica Lindberg, but also by Dawn Fielder and Darryl Horsman, friends, advisors and of supporters of this worthy cause.  It is because of them and our many generous donors that we have 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. 

Warmest Regards,
Brita Dietzel
President