DM

Lodnon

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.

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 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.’