It’s remarkable what the human body can endure and adapt to, especially in the face of unique challenges. Tessa Evans, born on Valentine’s Day in 2013, has profoundly influenced the medical world and touched the hearts of her family and many others. Diagnosed with Bosma arhinia microphthalmia syndrome, an exceedingly rare genetic condition, Tessa was born without a nose—a trait that set her apart and brought both challenges and opportunities.

A Rare and Extraordinary Condition

Bosma arhinia microphthalmia syndrome primarily affects the development of the nose and eyes and can influence puberty later in life. In some cases, it has been linked to abnormal brain structures. The condition was first documented in Vietnam in 1981, with earlier references dating back to the 1970s. Historical mentions in early 20th-century French literature suggest that while rare, it may have been more prevalent than recorded. Only about 100 cases have ever been officially documented, making Tessa part of an exceptionally small group of individuals who have overcome this extraordinary condition.

A Groundbreaking Patient

What sets Tessa apart is her role as the first person to undergo treatment for this condition at such a young age, pushing the boundaries of medical advancements. Her parents, Grainne and Nathan Evans from Maghera, Northern Ireland, were initially overwhelmed with shock and heartbreak upon discovering Tessa’s condition at birth. Grainne described the experience, saying, “Shock was the absolute biggest emotion at the time – then heartbreak.” Despite the lack of prenatal signs, the Evans family embraced their daughter with unwavering love and determination.

Defying the Odds

Despite the rarity of her condition and the uncertainty surrounding her future, Tessa has thrived. She spent her first weeks in the ICU and underwent her first surgery at just two weeks old, receiving a tracheostomy tube to aid her breathing and eating. Her parents found moments of joy even in the challenges, with Nathan recalling, “It was funny the very first time she sneezed. We actually found out that it actually comes from your chest. However, having that wee bit of normality was quite nice.” While Tessa lacks sinuses and a sense of smell, she can still sneeze and catch colds, showcasing her resilience.

Pioneering Treatment

At just two years old, Tessa underwent a groundbreaking nasal implant procedure. Using a 3D printer and the expertise of a medical tattoo artist, she received a cosmetic nasal implant—a process that will continue every two years until her teenage years, when a more permanent solution will be implemented. This innovative approach, typically reserved for adolescents, involves creating a nuanced nose with shaded contours and dimpled nostrils for a realistic appearance.