Tessa Evans loves running around, playing outside and blowing kisses.

But unlike any other 𝘤𝘩𝘪𝘭𝘥ren, she suffers from an extremely rare condition which means she has no nose.

The 17-month-old has complete congenital arhinia, which is so rare there are only around 40 cases reported in medical literature.

Tessa Evans has complete congenital arhinia, an extremely rare condition which means she was 𝐛𝐨𝐫𝐧 without a nose

The condition means Tessa has no sense of smell and no sinuses but she can cough, sneeze and catch a cold.

And despite her difficulties, she always has a smile on her face, 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 Evans with her parents Nathan and Grainne. They decided to share her daughter’s story to raise awareness of the condition, which is thought to affect around 40 people

‘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.’

Just weeks after giving 𝐛𝐢𝐫𝐭𝐡, while researching the condition on the internet, she came across a journal online which stated that babies 𝐛𝐨𝐫𝐧 like Tessa had poor mental and physical development.

She claims it implied that parents should be given the option to terminate their pregnancy.

Mrs Evans, a full time carer from Maghera, County Derry, says her daughter proves that statement wrong.

Recalling the 𝐛𝐢𝐫𝐭𝐡, she said: ‘As soon as I saw her face I 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.’

Tessa’s condition was detected during the 20-week scan which showed an abnormally flat facial profile.

Her mother and father – Nathan, 32, a nightclub manager – were told to prepare to make difficult decisions but the follow up 3D scan and tests revealed Tessa was perfectly healthy and everything was normal.

But the 𝐛𝐢𝐫𝐭𝐡 was extremely traumatic. ‘Doctors were able to stabilize her so she could breathe on her own and eventually I was allowed to hold her for a few seconds,’ recalls Mrs Evans.

‘I kissed her forehead and told her I loved her before they took her away.’

essa was also 𝐛𝐨𝐫𝐧 with other problems related to her condition, including a tiny hole in her heart and problems with her sight

‘I felt so lonely and helpless, I was supposed to protect my 𝑏𝑎𝑏𝑦 and be able to help but I couldn’t. There were tubes coming out of her tiny little body everywhere.

‘She spent her first five weeks in a neonatal intensive care unit which were undoubtedly the worst weeks of my life.’

There are just 47 recorded cases in the English records of people with partial or full facial anomalies and Mrs Evans admits she was worried about what people would think of her daughter’s face.

‘I found it a real struggle and was too scared of what people would think of her to even go outside at first, ‘ she said.

But she found the confidence after seeking support from the charity ‘Changing Faces’ and cranio-facial charity ‘Headlines’.

‘Wearing Tessa in a sling gave me the confidence to first go out in public, since it gave me control over who could see her.’

‘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 will shortly begin treatment at Great Ormond Street Hospital. The procedure will design a nose-shaped mould which can be inserted through an incision along her hairline and placed where her nose should be

She added: ‘Tessa is no longer a silent 𝑏𝑎𝑏𝑦 thanks to a special speaking valve. She runs around, plays outside and can blow the most gorgeous kisses.’

Tessa will shortly begin treatment at Great Ormond Street Hospital. The procedure will design a nose-shaped mould which can be inserted through an incision along her hairline and placed where her nose should be.

Her ‘nose’ will be replaced with a bigger one every couple of year as she grows.

‘We’ve explored different options but we settled on the least invasive one which will have the least drastic effect on her appearance,’ said Mrs Evans.

Her mother Grainne says using a sling gave her the confidence to first go out in public, as it gave her control over who could see Tessa

‘She is totally perfect to us the way she is, but we have to think about what will make life as normal as possible for her in the long run. It’s not been an easy decision.’

Tessa was also 𝐛𝐨𝐫𝐧 with other problems related to her condition, including a tiny hole in her heart and problems with her sight.

At just 11 weeks old she needed surgery to remove a cataract on her left eye but complications left her completely blind in that eye.

She also needed a tracheostomy fitted to allow her to breathe while eating and sleeping.

Despite having a difficult start to life, Tessa has always been healthy and met all her milestones, her mother says.

She has decided to share her daughter’s story after learning about an American family who were inspired to adopt a little girl with Arhinia – called Cassidy Hooper  –  in Ukraine who was in an orphanage.

‘I hope Tessa’s story inspires other people and families, I never want any 𝘤𝘩𝘪𝘭𝘥 to be unloved or left alone because of their differences and diagnosis’

‘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.’

Her husband Nathan added: ‘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.’

Tessa’s parents have set up a fund to help ease the financial strain that caring for Tessa’s complex medical needs brings.

Source: dailymail