Tessa Evans, the Northern Irish girl born without a nose, has captured hearts worldwide with her resilience, bright smile, and loving family. Born on Valentine’s Day 2013 in Maghera, County Derry, she has one of the rarest conditions on Earth. Today, at age 13, she continues pioneering treatments while living a full, joyful life.
The Extremely Rare Condition: Bosma Arhinia Microphthalmia (BAM) Syndrome
Tessa was born with complete congenital arhinia — the total absence of an external nose — as part of Bosma arhinia microphthalmia syndrome (also called BAM or BAMS). This genetic condition, usually caused by a spontaneous mutation in the SMCHD1 gene, has been documented in fewer than 100 people worldwide over the past century.
Key features of BAM syndrome include:
- Absence or severe underdevelopment of the external nose
- Eye abnormalities such as microphthalmia (small eyes), coloboma, cataracts, or vision impairment
- Potential issues with puberty and hormone regulation (hypogonadism)
- Absence of the sense of smell (anosmia) because the olfactory structures do not develop
- Blind or absent tear ducts, which can lead to infections
During pregnancy, scans showed an unusual flat facial profile. Doctors discussed the possibility of termination, but Tessa’s parents, Grainne and Nathan Evans, chose to continue. They have repeatedly said they never regretted that decision.
Early Challenges and Life-Saving Interventions
After birth, Tessa required a tracheostomy (a breathing tube in her neck) to help her breathe and eat safely, as she has no nasal passages. She also faced eye surgeries, including for cataracts. She cannot smell and breathes primarily through her mouth. Despite this, she can sneeze, cough, and experience colds in her own way.
Her family has always emphasized that she is happy, funny, and full of personality. She loves animals, music, trampolines, and school. Her mum often reminds her — and the world — that she is “beautiful with or without a nose.”
Groundbreaking 3D-Printed Nasal Implants
At age two, Tessa became a medical pioneer. Surgeons at Great Ormond Street Hospital (GOSH) in London fitted her with the world’s first custom 3D-printed nasal implant. The small device was placed under the skin of her mid-face through an incision in the hairline. The goal was to gradually stretch the tissue as she grew, creating a natural-looking nasal structure without major external scarring.
A larger implant was placed around age four. Unfortunately, it led to infections and complications, and doctors eventually had to remove it. Tessa has undergone more than 20 procedures over the years related to her condition, tear ducts, and facial support.
As of late 2025 and into 2026, she continues care at GOSH. Recent surgeries have focused on addressing residual tear-duct issues that can cause infections. Her team hopes to attempt another implant once healing is complete and infection risk is low. She has also begun using a mobility cane to help with her vision challenges.
What Tessa Looks Like and How She Lives Today
Tessa has long, curly hair (sometimes with colorful streaks), a radiant smile, and expressive eyes. Without a prosthetic or implant in place, her mid-face is flat where a nose would normally be — the classic appearance of complete arhinia. When implants have been in place, a small, soft bump appears, giving a more conventional profile while still looking uniquely like Tessa.
She lives at home in County Derry with her supportive parents and siblings. The family shares updates on Instagram (@tessabornextraordinary) and has appeared in documentaries such as Born Different. Tessa has spoken about looking forward to future surgeries and continues to approach life with courage and humor.
Her parents stress that while medical progress is important, acceptance and self-love come first. Tessa knows she is beautiful exactly as she is.
Why Her Story Matters
Cases like Tessa’s highlight both the challenges of ultra-rare conditions and the power of modern reconstructive surgery, 3D printing, and family advocacy. They also show how online communities and media coverage can connect families facing similar diagnoses and reduce stigma around facial differences.
Tessa Evans is not defined by what she lacks. She is defined by her strength, her smile, and the love that surrounds her. As she grows into her teenage years and continues treatment at one of the world’s leading children’s hospitals, her story remains one of hope, medical innovation, and the simple truth that different is beautiful.