Tessa, whose condition is so rare that there are fewer than 100 cases worldwide, is praised by her mother for her “charming” personality and “infallible courage.”
Eight years since she became the first human to get nasal implants, Tessa is powering through and living her best life, refusing to let her condition stop her “from doing anything.”
After a normal pregnancy with no signs of any abnormalities, Grainne and Nathan Evans were shocked to see their Valentine’s Day newborn was born without a nose.
Tessa, from Maghera, Ireland, has Bosma arhinia microphthalmia syndrome (BAMS), meaning she was born without a nose. According to the National Institutes of Health, the condition is so rare that there are fewer than 100 cases reported in medical history.
And because the condition is so rare, it’s not an easy fix.
For Tessa, it means she has no sense of smell and no sinuses, but she can still cough, sneeze and catch a cold.
“It was funny the very first time she sneezed, but we actually found out that it actually comes from your chest,” said her dad, Nathan. “However, having that wee bit of normality was quite nice.”
The first few weeks of Tessa’s life were difficult. She spent five weeks in intensive care, and when she was less than two weeks old, she had surgery to create a second airway with a tracheostomy tube, allowing her to eat and sleep properly.
When Tessa was only two, she became the first ever person to have a cosmetic nasal implant fitted to help create the missing appendage.
Normally, people who need a nasal prosthesis have the procedure done when they are a teenager, when the face has stopped growing.
“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,” Grainne said. “We ultimately decided to go ahead as it was a chance to gradually change her appearance over the years and to normalise her profile without ever cutting her face.”
The surgery on Tessa’s face will not be completed until her teenage years, and Grainne describes the long-term process: “They say once they have the final, nuanced nose in place that they will then get a medical tattoo artist to tattoo in light and shade to make the more detailed contours of her nose.” She added, “They can then dimple in the nostrils and shade them to look real.”
After the difficult decision was made, Grainne, a mother of three, longed to be at her baby’s side every minute while she was recovering.
“It was very stressful though, as I had never spent a night apart from Tessa, and it was quite soul-destroying to leave her side each evening at 11 p.m.” Grianne continued, “I was comforted by the fact I was a phone call away and could be there in just a few minutes. Whatever happened, I would be by her side when she woke up the next day. And that was a gift.”
Tessa at 10
Over the years, the transplant process has not been smooth: she even had to get one implant removed. But Tessa, now 10, stays strong and cheery.
“I really can’t wait for a new nose, it’s going to make me really happy. My BAMs syndrome will not stop me from doing anything,” Tessa said two years ago. “It’s disappointing that I can’t smell the good smells but it’s awesome that I can’t smell the bad smells,” the sweet girls adds with a giggle.
Now that Tessa is getting older, Grainne adds that her energy is getting brighter.
“Every day she inspires me with her zest for life and infallible courage. When she saw her new nose for the first time in a lift when we were in London, she looked at me with a huge smile on her face and said, ‘Mummy, I love my new nose.’”
While travelling the long, emotional journey, the charming young Tessa is inspiring people with her beauty and resilience.
Replying to posts made on her Facebook site, Tessa; Born Extraordinary, online users are gushing over the adorable girl.
“Her face may not be ordinary, but I find it exceptionally beautiful. Intelligence, character as well. Shine on, young one,” writes one. A second adds, “Tessa has grown and is beautiful and looks happy.”
A third netizen simply writes, “Seeing the pictures has made my day…”
Even without a nose, Tessa is a beautiful girl, and her condition doesn’t make her anything but extraordinary.
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