On May 1, 2017 we welcomed our first child, Bella, into the world. Bella was born seemingly healthy but we soon realized she had a few concerning symptoms. She endured countless tests and procedures looking for answers but she continued to puzzle doctors as her health rapidly deteriorated. On May 28, 2017 Bella passed away. We left the hospital without our baby and without a diagnosis.
Dr. Pankaj Agrawal went on to diagnose our daughter as the 12th person in the world to have had HIBCH deficiency, an extremely rare metabolic disease that is genetic. Because of Bella is to raise money to support Dr. Pankaj Agrawal’s genetic research. Our mission is that no family in the future will have to experience child loss from genetic disease.
In addition to finding our family much needed answers, Bella’s diagnosis gave our family the information we needed to plan for future children. In March 2019, after having success with Preimplantation Genetic Diagnosis IVF, we welcomed our son, Chance. This would not have been possible without Dr. Agrawal’s diagnosis. We want to support Dr. Agrawal’s research so that he may continue to help other families find diagnoses to either treat their children or have healthy children.
In March, 2018 we raised $72,000 at our first fundraiser. We were informed of the difference we made to other families and it has inspired us to continue our efforts. We created an official non-profit called Because of Bella. We thank you for your support in helping us honor Bella’s legacy while we work to support this truly life-changing cause.
For more information:
Katelyn Gimbel, Major Gifts Officer kgimbel@med.miami.edu; 540-718-2407
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