Saints on the Hill: A “Rare” Perspective on Grace and Understanding

For her Saints on the Hill presentation, Spanish Teacher Andrea Ramirez intentionally chose February 29 to deliver an important—and highly personal—message to the Canterbury community. 

Happening every four years, Leap Day is a rare occurrence, so it is also the perfect date to commemorate Rare Disease Day, something with which Andrea and her husband, Math Teacher Christian Ramirez, have become very familiar. A rare disease is defined as one affecting less than five people out of 10,000 in the general population. It is also something the Ramirez’s young daughter was born with. 

Andrea first spoke of other family members with rare diseases, including two favorite uncles and a cousin’s child. She then shared something even closer to home. “Another such person in my life is someone that you all have probably seen around campus, whether in the dining hall, outside, running around Old School House or Hume on a Saturday, or in Yearbook—my daughter, Emilia,” she said. “Looking at her, watching her interact with others, you may never guess that she is disabled. She has been described as funny, energetic, sassy, a firecracker…and all are absolutely true. And she is disabled. It just is not fully visible.”

Emilia was diagnosed with “a slew of issues,” but the main ones were microcephaly—tiny head syndrome—as well as short bowel syndrome and apple peel bowel syndrome, which left her with roughly 30% of the intestine length that she should have. How rare are these? “Microcephaly occurs roughly once in every 10,000 births,” Andrea explained. “Short bowel syndrome happens in 24.5 out of 100,000 live births, and apple peel bowel syndrome makes up less than 5 percent of those 24.5.”

The list of surgeries and procedures to follow for Emilia was extensive. From major surgery to remove a blockage on her second day of life to constant IV lines to endless visits to hospitals, every day has been a challenge for both parents and daughter. 

“Emilia is about to turn three. She has had 10 surgeries…has been put under anesthesia more than that for MRIs, eye scans, and CT scans…and has had countless x-rays taken,” said Andrea. “She has done physical therapy and speech therapy—from which she has graduated—and continues to go to occupational therapy because she was not able to learn how to eat as an infant. We had to take classes on how to care for her and her medical equipment. We figured it out and got good at it, but our daily schedules are incredibly hectic to keep her on an even playing field with her able-bodied peers.”

So why did Andrea share all of this? “Awareness, humility, and grace—and some food for thought,” she told the audience. “Looking at Emi, could you tell that she is disabled? That, for her entire life, she will have to micromanage her eating habits and convince people that she is not just doing so for a fad; that it is a real medical condition? Probably not. Most rare diseases are not visibly obvious.” 

Offering other examples of people whose situations might not be so obvious, Andrea cited ambulatory wheelchair users who occasionally need them to help manage symptoms and accomplish daily tasks when they have a flare-up; those with mental illnesses, whether it is temporary bouts of depression due to recent events or something they have struggled with for years; or neurodivergent individuals such as autists who must adhere to a specific routine.

Andrea closed with a heartfelt plea. “Give others grace before judgment,” she said. “We are each born different with unique needs and talents that we cultivate through life experiences. Frequently, those need time to develop, and we should allow ourselves the space to find out who we are and how we can impact those around us.”