It’s truly remarkable to discover how the human body can overcome and adapt to various abnormalities. Take, for instance, Tessa Evans, whose rare condition, Bosma arhinia microphthalmia syndrome, has not only made an impact in the medical field but has also inspired many people. Born on Valentine’s Day in 2013 without a nose, Tessa’s story is one of determination, groundbreaking medical advancements, and the steadfast support of her family.
A Rare and Unique Genetic Disorder
Tessa Evans has Bosma arhinia microphthalmia syndrome, a rare condition that impacts the development of the nose, eyes, and puberty, and may also affect brain structure. This disorder has been documented in only about 100 cases worldwide. First recognized in Vietnam in 1981, there are signs that it may have been present even earlier. Tessa is now part of a small but remarkable group of individuals who have defied the odds.
Tessa’s rare condition made her the first person to receive groundbreaking treatment at such a young age. When she was born, her parents, Grainne and Nathan Evans from Maghera, Northern Ireland, were shocked, as there were no signs during pregnancy. Despite the initial heartbreak, the couple chose to embrace their daughter’s uniqueness and sought innovative treatments to improve her quality of life.
Transformative Treatments
At only two weeks old, Tessa had her first surgery to get a tracheostomy tube, making it easier for her to breathe and eat. By the time she was two, she became the youngest patient to receive a cosmetic nasal implant. Thanks to advancements like 3D printing and medical tattoo artistry, Tessa’s nasal structure will become more permanent as she grows. Her parents are hopeful that these treatments will minimize the need for future surgeries and help her attain a more natural look over time.
Challenges and Safety Concerns
While Tessa’s treatments have improved her appearance, her rare condition still presents challenges. Lacking the ability to smell, she doesn’t have an essential warning system for hazards like fires or spoiled food. Her parents remain watchful to protect her, underscoring the importance of continuous support and awareness.
Inspiring Hope and Change
Tessa Evans’ rare condition has opened doors for others facing similar diagnoses. Her bravery, alongside her parents’ determination, has motivated another child in the UK to pursue similar treatments. Described as “charming” and “fearlessly courageous,” Tessa is continuously changing perspectives and advancing medical science. Her family’s Facebook page, “Tessa; Born Extraordinary,” chronicles her remarkable journey and is followed by nearly 10,000 people.
Conclusion
While Tessa Evans’ rare condition has presented immense challenges, her story serves as a powerful example of resilience, love, and medical progress. Through her journey, Tessa is inspiring change and hope, proving that with the right care and determination, anything is achievable.
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