I still remember one of the first times I went to Mass General. I was in a big conference room with my older sister Abbie, and we were sitting across the table from a neurologist. I remember hearing words I didn't know, like “seizures” and “epilepsy,” and I tried to understand what the doctor meant by “boo-boo in your baby sister’s brain.” This was the first of many times my family and I would visit Mass General, and it was the first time I learned of Caroline’s diagnosis.
My younger sister was born with a rare genetic disorder called Aicardi Syndrome. This is characterized by the absence of the corpus callosum, the essential part of the brain that connects the right hemisphere to the left. The prognosis differs from one patient to another, but many with Aicardi Syndrome never walk or talk. My parents were told Caroline may be blind, she may have to eat through a feeding tube, and that her life would be anything but typical. In what seemed like the blink of an eye, my family's dreams of Caroline’s future changed forever.
Fast-forward 20 years, and I am happy to report that Caroline can walk, talk, sing, yell, run, and dance. This is largely due to the tremendous care and support she has received from the doctors at Mass General. When we were first coming to grips with her diagnosis, Caroline's team reminded us how little is known about the brain, and that no MRI or CT scan tell us what she will and will not be able to do. They explained her challenges in ways that were understandable. They introduced us to specialists throughout Mass General who quickly became advocates for Caroline and my family. When Caroline was hospitalized, they made us part of her care plan. Most importantly, they gave us hope in a time of chaos and uncertainty.
Mass General has been an integral part of Caroline’s good health and success for the last 20+ years. I invite you to join me in giving back to an organization that has made such an incredible impact on my life, and the lives of millions of others. Your donation will directly benefit Mass General’s Emergency Response Team, which prepares MGH staff to provide world class medical care in emergent situations. Thank you for your support!