This story is about a little boy named Calvin, a boy who inspired his community to donate $25,000 to support the creation of a research framework that will allow his family, his physicians, his patient cohort, research scientists and his community to come together to help make things better for him. Calvin was diagnosed with Bloom Syndrome this past Spring, a rare genetic disorder associated with short stature, early childhood nutrition challenges, a sun-sensitive rash, and an extraordinarily high risk of developing cancer (or diabetes) early in life. His parents, both scientists themselves, were devastated not only by his diagnosis, but by the fact that despite their extensive scientific training, they did not have the expertise to save their son’s life.
Calvin’s mom Mary Beth: “There is nothing in the world so overwhelming as a mother’s love for her child. When Calvin was diagnosed with Bloom Syndrome, I felt a range of emotions: shock and disbelief that he could have something so rare, guilt that he had inherited my faulty genes, and an all-encompassing sense of dread knowing that someday (perhaps someday soon) he will develop cancer and that this cancer may be his killer. In the months since his diagnosis, however, another emotion has emerged: hope. Hope that there may be a cure – either for Bloom Syndrome itself or for the cancers that will one day emerge in Calvin’s body – and hope for a better understanding of Bloom Syndrome and the needs of Bloomies in order to lead happy, healthy lives.”
Calvin’s community stepped up to the plate. In a mere two weeks, a Consano record, this crowdfunding project was fully funded! $25,000 dollars was raised to help launch The Bloom Syndrome Nano-Course at the Children’s Cancer Therapy Development Institute. This course will bring together patients, families, physicians, and researchers for five days to discuss issues of cancer surveillance, cancer treatment, growth, dermatology, psychological development, and potential gene therapies. The output of the Nano-course will be a peer-reviewed roadmap for Bloom Syndrome research and clinical care guidelines. The published manuscript will then be available in the scientific literature for citation by those seeking support and publication of research addressing the needs outlined in the roadmap.
This special little boy has started a movement of hope, healing and love. Calvin’s story will help countless others and is a wonderful example of the power of a community to heal it forward.