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Action packed couple days in New York! It was a great time now time for bed! ... See MoreSee Less

4 days ago ·

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Empire State! ... See MoreSee Less

4 days ago ·

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#$40worthofm&ms ... See MoreSee Less

5 days ago ·

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NYC here we come! Another family adventure! #17peopleand8arekids ... See MoreSee Less

5 days ago ·

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It’s been amazing Giving Tuesday so far! The generosity and support is truly overwhelming! If you or your company would like to support Beats for Bella and Bella of the Ball in 2020 we are accepting wine donations go our Wine Pull at Bella of the Ball in March 20, 2020. #givingtuesday #bellaoftheball #livingwithhalfaheart #heartsbeatloud ... See MoreSee Less

1 week ago ·

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Tomorrow is #givingtuesday

If our work and mission speaks to your heart please consider making a donation to Beats for Bella via Facebook. Our Story is below.

My husband Justin and I were married in October 2011. Very soon after i became pregnant. We were overjoyed to be expecting our first child. Unfortunately, at our 8 week ultrasound there was no heartbeat. No matter when it is, losing a child...a life is an emotional trial. When the doctors cleared Justin and I to try for another baby we were blessed with another pregnancy in the early summer of 2012. On the day of our 20 week ultrasound we were deciding to find out if we were having a boy or a girl, not knowing the decisions we were going to be making very soon were much heavier. While the ultrasound tech went through all the checks, she seemed to have a hard time with an image. She excused herself
to get the doctor. As he was searching for something he stopped to talk to us. "There is something wrong with the baby's heart". Immediately tears started to flow. All I could think is that we are going to lose this baby too. The doctor assisted in getting us an appointment at The Children's Hospital of Philadelphia the next day at the Fetal Diagnosis Center. After a long Echocardiogram of the baby's heart we met with the team and they confirmed that our baby would be born with a severe single ventricle heart defect called Hypoplastic Left Heart Syndrome. Bella would be born without the left side of her heart. They told us the decision was ours
but that there is hope. They have a plan for babies born with HLHS. She could have a series of 3 open heart surgeries to repair her heart defect. My husband and I went in knowing there were no promises, but we had to try for her. We had to give her a chance. CHOP gave us the hope we needed to move forward. Everyday we look at our beautiful 6 year old daughter and feel overwhelmed. We are amazing blessed to have her and we want her to have every chance to live a long, happy life. Our nonprofit, Beats for Bella, has been working hard for 6 years to bring awareness to the prevalence of
Congenital Heart Defects. 40,000 babies are born every year with a Congenital Heart Defect. CHD is the #1 birth defect in the world. Bella is one of the 1,000 babies born annually with HLHS. We have been working to contribute to research projects at The Children's Hospital of Philadelphia, The Mayo Clinic HLHS Program and Dr. Rodefeld's Fontan Blood Pump. The support of our family, friends and community is tremendous. They truly believe in our work and our cause. We have found a new sense of obligation, digging into WHY we do what we do. Everyday 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 do everything in our power to support the institutions and doctors who are conducting the groundbreaking treatments and research to save her life.
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, Lily, Ganyn, Blake, Danny, Gabe , Abbey and Hayden. These are only a few of the special children who have touched our lives. 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 to not just walk this road, but to brave the storms and make the largest impact we can...to empower and give hope to new families just beginning this journey.

#livingwithhalfaheart #beatsforbella #HeartsBeatLoud ... See MoreSee Less

1 week ago ·

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