Belfast Telegraph

Brave Tessa Evans' amazing story goes around the world thanks to Belfast Telegraph

By Claire Williamson

Remember little Tessa Evans, the girl who was born with no nose? Her family wanted to raise awareness of her extremely rare condition. Now, thanks to the Belfast Telegraph, she's made headlines all over the world.

The 18-month-old toddler was born with the facial anomaly arhinia.

Parents Grainne and Nathan Evans, from Maghera in Co Londonderry, were horrifed after they read advice on the internet that recommended pregancies be terminated if the unborn baby had Tessa's condition.

They campaigned to banish the fear surrounding the condition and spread their daughter's story.

Media outlets in London and as far away as New York have picked up on the incredible tale of the little girl after she was featured on the front page of this newspaper.

Grainne can hardly believe it.

She said: "It was nerve-racking putting our story out there.

"The thing that really touches us is whenever we get people saying that she has brightened their day or inspired them in a bigger sense.

"It's been lovely."

Mum of Tessa - born without a nose - opens her heart about family's struggle for information on rare condition  

She added: "The day after the Belfast Telegraph article came out I tried to take her for a walk to put her to sleep. I was stopped by three people and we had big, long chats and I came home with a very awake baby.

"But I was a very proud mummy anyway, so it didn't matter."

The family were then inundated with emails and calls from Press agencies around the world.

"The main goal was always to raise awareness so that the next family with a baby like Tessa isn't left completely in the dark like we were.

"So we decided to go ahead and reach a wider audience."

Tessa is currently waiting to undergo surgery in Great Ormond Street Hospital in London, which will be the first of its kind.

While her treatment costs are covered by the NHS, the family have said they are "incredibly grateful" for the donations to help with daily life.

Grainne said: "We are constantly on the lookout for things that could improve her.

"One thing, for example, that we are trying to provide for her are air filters for the house. She doesn't have any way of filtering air like a normal person.

"I would really like the air quality to be as good as it can."

Tessa's parents say they couldn't be more proud of their special little girl.

Grainne added: "She just means so much to us and to see that beautiful little smile of hers poppng up in different places, and to have people sharing the story.

"I just want to say a huge thank you, because this was not an easy decision.

"I went from someone who didn't want anybody to see my baby, to sharing this with the world and Belfast.

"And so just thank you that the response has been so good."

She added: "We have had really warm, positive feedback.

"And I just really hope she can continue to be the little girl that inspires other people."

Background

Tessa's incredible story was featured in this newspaper last month. There are many misconceptions surrounding Tessa's defect, which has led to children being abandoned and put up for adoption. Only 47 cases like Tessa's have been recorded in medical literature in recent history. To donate to help Tessa's family with her day to day needs, visit: www. gogetfunding.com/project/ tessa;-born-extraordinary

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