Because of Bella
Our goal is to support Dr. Pankaj Agrawal and Dr. Amy Kritzer, and their staffs, in their work to help find diagnoses and eventually cures for genetiic and metabolic diseases and disorders. All money raised will be split between their research funds.
We first met these doctors when our daughter Bella was admitted to Boston Children's Hospital in May 2017. Dr. Agrawal was the attending physician in the NICU that particular day, and for that we feel blessed. He allowed us to be the third family to participate in a new study his team was conducting to get rapid genetic sequencing completed. This was critical in understanding what was happening with Bella, and also in understanding how we can have healthy children. Typically genetic sequencing results take months to get, and ours took only a week in Dr. Agrawal’s study.The results showed Bella had inherited an extremely rare gene that we both carry called, HIBCH. Our hope is that any family in a similar situation have access to this type of study to begin getting answers as soon as possible.
Dr. Kritzer and her team met Bella shortly after her arrival to Boston Children's and immediately started helping us figure out what was happening. After Bella passed away, she led the efforts to conduct metabolic testing which could conclusively link HIBCH to Bella’s death, which is an important step in helping us have healthy children. Bella is now confirmed as the 12th person in the world to have had the HIBCH deficiency. Dr. Kritzer’s care and support to both Bella and our family is amazing.
These doctors and their teams do incredible, life-changing work. Supporting their research will save lives and someday, we hope, prevent other families from going through what we have.
Ryan and Rachel