Celebrating George, Supporting Research
So much feels like a blur since our pregnancy when we heard, “Your daughter has Turner Syndrome and some heart defects.” Going through surgeries, hospital stays, heart caths, and countless appointments at Duke, has not been without agony. But it has been the people at Duke Children’s, especially Duke Pediatric and Congenital Heart Center—the cardiologists, nurses, surgeons, therapists, sonographers, support staff, and fellow parents—that have offered and continue to offer honesty, hope, and healing so George, and we, may thrive. There is deep comfort in knowing George is in the hands of the best.
Out of our deepest gratitude and admiration for all that this program and team means to our family, and thousands more families like ours, we, with your help, hope to play a small part in raising money for scientific research around congenital heart disease. We’re wanting to raise $50,000 that interfaces directly with CHD patients and families at Duke Children’s. We want to lessen those blurry, overwhelming moments for families with more direct funding and scientific research programs that continue to enhance cohesive, quality care.
A fact guiding our choices is how grossly underfunded scientific research is around congenital heart disease nationally and how that limits what even the top programs can do. Scientific research has played and continues to play a key role in George’s ability to live, grow, and thrive. And yet, scientific research for CHDs is shockingly underfunded. Even though 1 in 100 babies are born with CHDs, even though it is the most common birth defect, and even though more children die from CHD complications than childhood cancer, nationally, CHD research is 5x underfunded compared to pediatric cancer research. As a parent of a child with CHD these statistics are not comforting.
If we raise $25,000, we can support quality improvement efforts, such as adapting neurodevelopmental lessons in feeding and formula mixing for families with low literacy and numeracy proficiencies will be met. Duke Children’s is one of 60 centers in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), which aims to improve the outcomes of care for children with congenital heart diseases.
If we raise $50,000, we can expand the development of a congenital heart disease app for heart patients and families, to create a life-long connection between patients and their care teams. Gifts will fund professional video modules that provide helpful, remote sessions for physical therapy, occupational therapy, feeding (speech therapy), etc. A goal is that this app, and these videos, will then expand accessibility of these resources to multiple care centers to help more children and families.
We recognize this is a bold ask, asking our beloved community and those who know of George’s story, to collectively give $50,000 or more during George’s birthday month. George’s life, though, was never a guarantee. Yet, here she is, about to be 1!
Let’s celebrate and honor all the wonder, delight, and sheer miraculous that is George by boldly supporting and underwriting the brilliant, cutting edge work fostered at Duke Pediatric Congenital Heart Center, a place and a people, who continue to keep our daughter, as well as thousands of other children, alive, thriving, and smiling.
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