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Congenital Heart Defects occur in 1 out of 100 births in United States.

It is the #1 cause of death in children under the age of 1 compared to ALL childhood cancers combined.

Our Kids

It was my birthday, and our family was waiting to hear the news on the gender of our fourth child with excitement and anticipation. ‘It’s a girl’ we heard the sonographer declare and our other three kids started to cheer.

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Our Goals:

To provide financial assistance to families who are unable to secure adequate financial resources to travel for the Fetal Cardiac Intervention and follow up care.
To provide Parent-to-Parent contact to support, encourage and share resources with families.
To support research about the Cardiac Fetal Interventions and its outcomes.
To raise awareness about the option of a Cardiac Fetal Intervention.
To raise awareness about the prevalence of Congenital Heart Defects.

Our Long-Term Goals:

To align ourselves with organizations that research and put into practice ways to diagnose, treat, and prevent complex Congenital Heart Defects. To be avenue of support to other institutions, nation-wide, as they develop their fetal cardiac intervention programs.

Our Accomplishments

Awarded a $7000 grant to The Yawkey Family Inn which is a patient and family housing facility Children’s Hospital Boston.
Awarded 11 grants to families in need.
Secured our first corporate grant.
Established a virtual support group, as well as, a parent-to-parent network of families to provide one-on-one support.
Developed an Advisory Board of dedicated and talented professionals.
Collaborated with Children’s Hospital Boston and Brigham and Women’s Hospital to identify specific families’ needs.

What do we offer families and why is it important?

We award grants to families traveling for the Fetal Cardiac Intervention or follow up care. These grants assist with lodging, airfare and/or meals.

For some of our families, traveling to Boston for the fetal cardiac intervention “would not have been possible without the financial assistance from Ellianna Grace Foundation.” For other families, our grants have helped alleviate the overall financial burden of traveling out of state for medical care and from extended hospital stays (up to 3 months).

In addition, we facilitate parent-to-parent connections via one on one communication and a web group that provides online support.

This support network proves to be an invaluable resource to our families. The parent-to-parent connections provide insight to the many struggles a family experiences while caring for a child with a Congenital Heart Defect. Issues such as: feeding issues, securing early intervention, and communicating with health professionals are addressed. This information empowers families to better advocate for their special child so he/she can reach their full potential!