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.
Her parents explained their decision: “It was an incredibly difficult decision for all of us; we love Tessa so much and thought she was completely beautiful the way she was. We ultimately decided to go ahead as it was a chance to gradually change her appearance over the years and to normalize her profile without ever cutting her face.”
Challenges Ahead
While medical advancements have helped normalize her appearance, Tessa still faces unique risks. Without a sense of smell, she cannot detect dangers like fire or spoiled food. Grainne highlighted the concern: “She can’t smell if something is dangerous, if something was burning or if food is very rotten. Another child would automatically lift that up and know not to put it in their mouth, whereas Tessa doesn’t have that same early warning system.”
Inspiring Others
Tessa’s journey has paved the way for others with similar conditions. Another child in the UK has undergone a similar procedure thanks to the groundwork laid by Tessa’s case. Her mother describes her as “charming” and full of “infallible courage,” proving that with the right treatment, support, and encouragement, anything is possible.
The Evans family shares updates on Tessa’s life through her Facebook page, Tessa; Born Extraordinary, which has garnered nearly 10,000 followers. Through her story, Tessa continues to inspire, reminding the world of the power of resilience and innovation in overcoming life’s challenges.
