Nikolai Gogol (1809-52) wrote "The Nose," about a man whose nose disappears. He may never have known a person could really live without a nose. Credit: Wikimedia Commons[/caption]
It's a story straight out of Nikolai Gogol.
But the famed Russian author of "The Nose," a surreal tale in a which the nose of an imperial bureaucrat vanishes off his face, later adapted to opera by Dmitri Shostakovich, may never have known that such a situation could play out in real life.
But for one Irish family, the fantasy of a Russian author who eventually went insane and burnt the manuscripts of "Dead Souls: Part Two," the continuation of his unfinished masterpiece while on his deathbed, is a reality.
Tessa Evans was born without a nose due to a rare disease known as arhinia. Now 18 months old, her parents have gone public with her story to give hope to other parents whose children are born with the same disorder, and to seek help paying for their expenses.
"Our beautiful daughter was born on Valentines day with a rare congenital facial condition known as Arhinia. She was born without a nose. There are only a handful of babies like Tessa in the world," write Nathan and Gráinne Evans.
So far, the Evans have raised £3,960 on Go Get Funding -- about $6,700.
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While the Evans have insurance to pay for treatment that also covers travel fares to London, they are seeking help paying for the smaller necessities of life -- gas to get to medical appointments, special air filters for their daughter, hypoallergenic mattresses, and expenses for days out for Tessa and her siblings so they can enjoy a normal life.
They also hope to create some shade in their outdoors garden so that Tessa can play outside without feeling the harmful effects of sunlight, as she cannot wear sunglasses, and also is blind in one eye.
Grainne Evans has documented her daughter's growth at her blog "Born Extraordinary," telling the tale of how Tessa was born on Valentine's Day and fought against the odds to survive -- undergoing her first surgery, a tracheostomy, at 8 days old, and staying in intensive care for five weeks.
Now, Tessa is being treated by doctors in London, and is preparing to have a rubber prosthetic nose fit onto her face.
According to doctors, only 37 cases of arhinia have been documented in medical literature.
Some medical journals say it is best to abort babies with arhinia, which the Grainne Evans told the Belfast Telegraph "is false on so many levels."
Check out a video of Tessa playing below:
To help the Evans family, visit their fundraising campaign page.