Tessa Evans was born with one of the rarest conditions in the world.
Little Tessa Evans, from the town of Maghera in County Londonderry, Ireland, unexpectedly became known in the media because of a rare genetic condition called Bosma arhinia microphthalmia (BAM) syndrome. This means Tessa was born without a nose and breathes through her mouth.
The congenital absence of the nose that Tessa has is so rare that only 47 similar cases had been recorded in the medical history of the United Kingdom. It is considered one of the rarest conditions in the world, and Tessa is the only person in Ireland known to have it.
Although she has no sense of smell and no nasal sinuses, little Tessa can still cough, sneeze and catch colds just like other children. Her mother, Grainne Evans, says that despite the challenges her daughter’s condition brings, Tessa always has a smile on her face.
When her daughter was born without a nose, Grainne had many worries. “But ever since Tessa came home, gradually, people stopped noticing her differences,” she shared.
“To us, she still looks perfect. But we needed to find ways to help her live as normal a life as possible, just like everyone else,” Grainne explained.
The family established a support group and a Facebook page called “Tessa: Born Extraordinary” to share Tessa’s journey and everyday life. They also contacted around 40 other families worldwide, helping connect enough participants for genetic research and further classification of the condition.
Time has flown by, and Tessa is now 10 years old. Last November, she made a surprise appearance on the famous television programme “The Late Late Show,” which airs annually as part of Ireland’s Christmas television tradition. Grainne explained that Tessa’s teacher, Muinteoir Laurene, was the one who suggested submitting an application for the iconic television programme, which first aired in 1975.
Tessa amazed viewers with her appearance and the way she is living today. The most noticeable thing was the same bright smile that continued to light up her face.
“We made a very simple short video of Tessa talking about her favourite toys, and we were absolutely amazed when we were invited to an audition.
“We travelled to Dublin, and it was a wonderful day for her. Parents were not allowed into the audition room, but Tessa was so confident. She simply walked in, and I could hear laughter coming from inside the room. Then we waited anxiously for two weeks. Finally, we received a phone call telling us that Tessa had been selected for the programme. It was truly a dream come true for us.”
Grainne added that Tessa had two rehearsals. “Everything went really well, and Tessa had already enjoyed a wonderful experience. It was amazing to take part in one of the shows because there were so many other little girls participating alongside my daughter. She made lots of friends and was so excited to share the experience with them.”
Grainne explained that Tessa, who has her own Facebook page, is now accustomed to being interviewed and appearing in front of television cameras for documentary filming.
Speaking about her daughter’s current condition, she said: “Tessa is the only person in Ireland known to have this condition (BAM), as far as we know, so her Facebook page is a way to connect with other people around the world. We have built so many connections through it. Tessa was born without a nose and also has a visual impairment.
“There are also hormonal concerns, and she has undergone a tracheostomy to provide an additional airway.”
Source: Kenh14
