1 in 100 million: Baby girl born without a nose in the UK

PHOTO: 1 in 100 million: Baby girl born without a nose in the UK

Tessa Evans, now 17 months old, was born without a nose.

She has complete congential arhinia - meaning that her nose never developed in the womb. There have only been 47 cases recorded in recent medical literature.

"It was a complete shock when she was born," her mother, GrĂ¡inne Evans, 30, wrote their fundraising page .

Tessa has no sense of smell, but she can cough, sneeze and catch a cold. She also has sight problems, and is completely blind in her left eye.

Tessa underwent surgery to help her breathe while eating and sleeping when she was just eight days old. She stayed in neonatal intensive care unit for five weeks. "For us, her parents (and the rest of her extended family) it was some of the hardest days of our lives," Evans wrote.

Evans initially worried about what others would think of her daughter's face, but has now gained the confidence to go out with Tessa in public.

"Now when we are 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," she said.

Despite her disability, Tessa is a bright and happy child, and her parents are exploring ways for her to live a normal and healthy life as she grows up. To this end, they have set up a fund to help with the financial costs.

Evans added that she wants to share Tessa's story to inspire other families with children born with differences. "I never want any child to be unloved or left alone because of their differences and diagnosis," she said.

She said another purpose of her writing on her experiences is to help them connect with others in similar situations.

"When Tessa was born one of the most difficult things for us was the lack of information. No one was able to tell us if babies like Tessa would be ok or what kind of lives they could lead. The unknown was terrifying .... so when I found news stories about a teenager in North Carolina called Cassidy Hooper who was born without eyes or a nose and saw the amazing, confident, inspiring young woman she was, it was the most incredible feeling.

"Now through sharing my blog and the new Arrhinia FB page we've connected with several families (from Brazil, Belgium, America, Finland) and are able to share stories, celebrate our gorgeous babies and learn from each others experiences," she wrote on her Facebook page.

"It has been an unbelievable and at times heartbreaking year for us watching our tiny baby go through this and knowing that it is really only the beginning of her story. She has overcome so much already. As she has grown, our brave, baby girl has shown us how extraordinary she really is. She is 17 months old now and has surpassed everyones expectations by meeting every milestone and stealing the hearts of everyone she meets," Evans wrote.

"Although we are incredibly lucky to have an otherwise healthy, strong daughter, our lives are filled with hospital appointments and medical check-ups."

The family's finances have been strained by not only the medical bills, but also the regular trips they have to take to get to the medical specialists Tessa requires.

"Although our travel is paid for, the financial implications of these trips is still significant. We hope that, by asking people to donate to this fund, we can continue to seek out the best medical care without worrying about sinking into debt," she wrote.

For details on how to donate, go to http://gogetfunding.com/project/tessa;-born-extraordinary .