The human body’s ability to adapt and overcome challenges is truly remarkable. Tessa Evans, born on Valentine’s Day in 2013, exemplifies this resilience. Diagnosed with Bosma arhinia microphthalmia syndrome—a rare genetic condition—Tessa has not only become a symbol of medical advancement but also a beacon of hope and inspiration.
Understanding a Rare Genetic Condition
Bosma arhinia microphthalmia syndrome affects the development of the nose, eyes, and puberty, and can also influence brain structure. With fewer than 100 documented cases worldwide, the condition is exceptionally rare. First identified in Vietnam in 1981, evidence suggests its existence may date back even further. Tessa Evans is one of the few individuals living with this condition, representing a unique story of courage and progress.
A Trailblazing Journey
Tessa’s parents, Grainne and Nathan Evans from Maghera, Northern Ireland, were unprepared for the diagnosis, as no abnormalities were detected during pregnancy. Despite the shock, the couple embraced their daughter’s uniqueness and embarked on a mission to enhance her quality of life through groundbreaking medical treatments.
Groundbreaking Treatments
At just two weeks old, Tessa underwent her first surgery to receive a tracheostomy tube, enabling her to breathe and eat more easily. By the age of two, she made history as the youngest patient to receive a cosmetic nasal implant. Utilizing advanced technologies such as 3D printing and medical tattooing, doctors are working to create a permanent nasal structure for Tessa as she grows. These innovations are designed to reduce the need for future surgeries and provide her with a more natural profile.
Challenges Beyond Appearance
Living without a sense of smell presents unique safety challenges for Tessa. Without this critical sensory warning system, she is more vulnerable to dangers like fires or spoiled food. Her parents remain vigilant, ensuring her safety and emphasizing the importance of raising awareness about her condition.
Inspiring Change and Progress
Tessa’s courage and her family’s determination have sparked hope for others facing similar diagnoses. Her groundbreaking treatments have inspired another child in the UK to pursue similar procedures. Described as “charming” and “fearlessly courageous,” Tessa continues to challenge perceptions and drive innovation in medical science. Her family’s Facebook page, Tessa; Born Extraordinary, documents her incredible journey, inspiring nearly 10,000 followers.
A Legacy of Resilience
Tessa Evans’ story is one of love, resilience, and medical breakthroughs. Despite the extraordinary challenges posed by her rare condition, she exemplifies what is possible with determination and the support of a dedicated family. Tessa’s journey is not only reshaping lives but also redefining the boundaries of medical science.
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Rоdео stаr’s 3-yеаr-оld sоn diеs twо wееks аftеr trаgiс rivеr ассidеnt
Levi Wright, the young son of rodeo star Spencer Wright, has died.
The three-year-old died after suffering a trаumаtic brain injury from a near-drowning incident on May 21.
Levi was hospitalized at a Salt Lake City hospital after accidentally driving a toy tractor into a river near the family’s home on May 21. Local law enforcement found Levi unconscious about a mile downstream.
Although he was initially declared brain dеаd and not expected to survive, the boy began showing signs of improvement.
“LEVI WOKE UP! I am shook, we don’t know much but the doctor said it was okay for me to get excited about that and I AM! My baby is so tough!” his mother Kallie Wright wrote on Facebook.
Unfortunately, the following day the results of an MRI “wasn’t good.”
“We’re shattered but it is just images that suggest a certain quality of life. Our real teller of all will be what Levi does over the course of a few days,” Kallie shаrеd.
As Levi continued his fight in the hospital, his family and friends continued asking for prayers.
On June 2, Kallie shаrеd devastating news.
“After several sleepless nights, lots of research, multiple conversations with the world’s best neurologists & millions of prayers we are here in the face of our biggest fear,” she wrote. “Levi showed us just enough to buy us time for all of this. We prayed those things were him defying odds & proving to us that he wanted to stay here but we see now he wanted to give us time to find peace with letting him go.”
After countless tests, scans, and consultations, the Wright family took Levi off life support.
The following day, June 3, a family friend, Mindy Sue Clark, confirmed on Facebook that Levi had died.
“I cannot even begin to explain how hard the last two weeks have been. From the moment my phone rang the night of his accident, to last night receiving the message that he had to go. I don’t want to focus on the bad or sad, even though it feels likе someone ripped my heart out and squeezed it right in front of me. I want to focus on the many miracles we all got to bear witness to in those 12 days.”
“The most perfect three year old there ever was. So perfect we didn’t get to keep him. This baby boy moved mountains the last 12 days. He brought so many people together. In a world so dark, we got to see light at the hands of a child. He’s everything his mom and dad could’ve wanted him to be.”
Our prayers are with the Wright family during this extremely difficult time.
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