Epidermolysis bullosa (EB) is a rare, genetic disorder that causes skin and mucous membranes to become extremely delicate. The smallest touch, bump, or scrape can result in painful blistering and wounds. My nephew Felix Jean, born January 4, 2022, was diagnosed with recessive dystrophic EB in the first weeks of his life. The diagnosis shook the ground our family stood on and left us all off-axis in its wake. Felix died on March 15, 2022, in the loving arms of his mother and father, surrounded by his sister and family.

Loss is a universal experience. While most will not know what it is like to gently cradle a newborn through surgical drapes or routinely pierce skin with sterile needles to drain blisters, we all know what it is like to feel helpless in the face of grief and loss. My family couldn't bargain for more time with Felix, but we can raise awareness and funds for causes that supported him and patients like him. That is why I have chosen to run the TCS New York City Marathon this year in Felix's honor for Team DEBRA. Debra (Dystrophic EB Research Association) is a nonprofit organization that provides patient programs, education, advocacy, and research funding for patients and families affected by EB.