It’s amazing how the body can adapt to unusual conditions. Tessa Evans, born on Valentine’s Day in 2013, has a rare condition called Bosma arhinia microphthalmia syndrome, meaning she was born without a nose. Her story has inspired many, showing her strength, medical progress, and the deep love of her family.
A rare and unique genetic condition
Tessa Evans has a rare condition called Bosma arhinia microphthalmia syndrome, which affects the nose, eyes, puberty, and sometimes the brain. With only about 100 cases worldwide, it’s extremely uncommon. First recorded in Vietnam in 1981, it may have existed even earlier. Tessa is part of a small, inspiring group of people who have overcome incredible challenges.
The Journey of a Trailblazer
Tessa Evans’ rare condition made her the first child to receive a new type of treatment. Her parents, Grainne and Nathan Evans from Maghera, Northern Ireland, were surprised when she was born, as there had been no signs of her condition during pregnancy. Despite their sadness at first, they accepted their daughter’s uniqueness and looked for new ways to help her live a better life.
Life-Changing Treatments
When Tessa was just two weeks old, she had her first surgery to get a tracheostomy tube to help her breathe and eat. At age two, she became the youngest person to get a cosmetic nasal implant. With the help of 3D printing and medical tattoo techniques, Tessa will eventually have a permanent nasal structure as she grows. Her parents hope these treatments will reduce the need for more surgeries and give her a more typical appearance over time.
Ongoing Challenges and Safety Concerns
Despite these treatments, Tessa’s condition still brings difficulties. Without a sense of smell, she can’t detect dangers like smoke or spoiled food. Her parents stay alert to keep her safe, showing how important ongoing care and awareness are.
Inspiring Change and Hope
Tessa Evans’ rare condition has opened new doors for others with similar diagnoses. Her bravery and her parents’ dedication have inspired another child in the UK to pursue similar treatments. Known for her charm and fearless courage, Tessa continues to break barriers and contribute to advancements in medical science. Her family shares her incredible journey on their Facebook page, “Tessa; Born Extraordinary,” which is followed by nearly 10,000 people.
Conclusion
Despite the challenges of her condition, Tessa’s story showcases the power of resilience, love, and medical progress. She inspires hope and change, proving that with the right care and determination, anything is possible.
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