Little 17-month old Tessa Evans is a baby in 100 million because she was born with one of the rarest of birth defects – she doesn’t have a nose.
The condition, called Arhinia, is the absence of the nose and parts of the olfactory system which governs the sense of smell. It is so rare that only around 40 cases have ever been reported in medical literature, according to a report in The Daily Mail.
The fact that Tessa cannot smell, and has no sinuses, does not prevent her from sneezing, coughing and catching cold. Her mother Gráinne says,
At first I just couldn’t understand it, I didn’t even know it was possible.
How did my little girl not have a nose? Was she going to live? Would anyone be able to help her?
But ever since we got her home she’s grown every day, smiled more and the more she shines the more her differences fade into the background.
Tessa is so petite but she’s the most determined little girl I know, she adores her big brother and sister, copies everything they do and despite her ‘disabilities’ is already a typical toddler who climbs the furniture and loves to dance.
Everyone who meets her instantly falls in love with her, we just want her to inspire other people like she inspires us.”
However, at the time of the birth, her mother knew something was wrong: “I was in shock and I just froze. The midwife cut the cord before I could even say anything and whisked her away from me.”
The birth was extremely traumatic, and Tessa spent the first five weeks in a neonatal intensive care unit. Now, she admits that she was afraid of people’s reaction when they first set eyes on her daughter.
Eventually, she found the confidence to take Tessa out with her after seeking support from the charity “Changing Faces,” and cranio-facial charity “Headlines.” She says, “Now when we’re out and about I’m no longer afraid of what people might think. In fact I think she will help people see that ‘different’ can be beautiful too.”
Tessa is due to begin treatment at Great Ormond Street Hospital in London. A nose-shaped mold will be be inserted through an incision along her hairline and installed where her nose should be. It will need to be replaced with a bigger one as she grows.
Sadly, being born without a nose is not Tessa’s only problem. She also has a tiny hole in her heart, and difficulties with her sight. A cataract discovered when Tessa was 11 weeks old has left her blind in one eye.
Tessa’s parents hope that her story will me an inspiration for other people and families. Gráinne says, “I can’t believe how much can change in a year. I was so worried about my little girl when she was born but she’s defied all the odds and I am so proud and grateful to be her mummy.”
Nathan Evans agreed, saying, “‘We know there are still challenges and multiple surgeries to come but when she flashes that cheeky grin of hers, it’s all worth it.”
Due to the fact that caring for Tessa places a real strain on the family’s finances, her parents have set up a fund to cover the costs of the specialized medical treatment Tessa is going to need in the future.
Image: Caters News Agency