Bella of the Ball 

"Rewrite her Stars"

Bella was born with a severe Congenital Heart Defect called Hypoplastic Left Heart Syndrome on March 18, 2013 in the Special Delivery Unit at The Children’s Hospital of Philadelphia. HLHS is a single ventricle heart defect in which the left side of the heart does not form. This type of heart defect is fatal if untreated and requires three open heart surgeries to repair the defect, typically by the age of 3. Bella had her third and final planned open heart surgery to complete her repair on April 4, 2016. While her repair is complete her life with a Congenital Heart Defect will never end. She needs continued cardiac care. At Beats for Bella we work very hard to spread awareness for Congenital Heart Defects. Annually 40,000 babies are born with a Congenital Heart Defect (that is 1 in 110 babies!). Of those 40,000, 960 are born with Hypoplastic Left Heart Syndrome like our daughter Bella. Considering its prevalence CHD research is significantly underfunded. We hold a variety of fundraisers throughout the year as well as constant social media awareness projects to help spread the word about what Bella and so many other children fighting a Congenital Heart Defect go through.  

We have been working to contribute to research projects at The Children's Hopsital of of Philadelphia, The Mayo Clinic HLHS Program and Dr. Rodefeld's Fontan Blood Pump.  We have a new sense of obligation...digging deep into WHY we do what we do.  Every day with Bella is a blessing, but that does not change the fact that if research and treatments do not advance her heart will fail.  Bella's heart will fail someday if we do not so something...if we do not do our part to support the institutions and doctors who are conducting the groundbreaking work and research to save her life, we are failing her.  We would also be failing every child fighting every day to live.  Through this journey we have seen sweet babies leave their families too soon.  This world fills us with so much joy and breaks our hearts in the same day.  Beats for Bella has a responsibility to do our part, not just for Bella, but for Xavier, for Lily, for Ganyn, for Blake, for Danny, for Gabe, and for Hayden.  These are only a few of the special children we have met along the way.  Their families celebrate and grieve just like ours.  We have had to grieve a life we will never have, a life of "normalcy" that will never exist for Bella and our family.  We made the decision for Bella and our family to not just walk this road, but to brave the storms and make the largest impact we can and to empower and give hope to new families just beginning this journey.