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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Florida mom gives birth to rare set of identical twins with Down syndrome
Identical twins are a miracle all by themselves. Births like this happen three or four times in 1000.
Savannah Combs, a first time mother, learned she was carrying twins. She and her husband were overjoyed by the thought of welcoming two babies.
Everything went well with the pregnancy and the couple learned they were expecting girls. However, they also learned that their identical twins both had Down Syndrome. The news came as a shock at first, but Savannah, 23, soon realized that the condition only meant that her girls would be super special. She didn’t mind they would be born with the syndrome. Of course, she was aware that there would be people who wouldn’t accept her bundles of joy, but that didn’t concern her a great deal.
“It’s very rare what they have, but they’ve been my little gems,” the proud mother told News4JAX.
Once the girls were born, Savannah and her husband Justin decided to share their journey on TikTok. The two tiny beauties, Kennadi Rue and Mckenli gained a number of followers on the social media where Savannah posted about each of the milestones they reached.
In one of the videos she shared on TikTok, Savannah revealed how doctors advised her to terminate her pregnancy because the chances of her girls to survive were slim, but she decided to give them a fighting chance. As it turned out, she did the right thing. ”Every [prenatal] appointment they were alive was a blessing to me,” Savannah explained.
They were born five weeks prematurely and had to spend some time at the NICU. Today, they are nine months old and thriving. In fact, they are just like any other baby out there.
“They’re called mono di twins, meaning that they had their own sacs, but they shared the same placenta, meaning that they were going to be identical,” Savannah explained.
“Mo di twins as it is, it’s like very rare. And then you throw Down syndrome on top of it, it’s like one in 2 million.”
“They have feelings. They have a beating heart. They know how to talk. They know how to do things you do. They will get there,” she added. “Like I said, it may be a step behind but they’re going to do it. I’ve learned these kids are feisty little things and happy little things.”
She loves showing the world that having Down Syndrome doesn’t necessarily mean the life of those people is in any way affected negatively.
“I’m going to let them know that they’re just like us and they’re going to get there as long as they put their minds to it.”
Of course, there are always those who post negative comments and judge Savannah for keeping her babies.
”I wouldn’t want those babies; if mine came out like that, they would be straight up for adoption,” one person wrote under one of the videos. However, this mother had just the right answer for the mean person. “I said, good thing they weren’t born to you and were born to me. God knew what he was doing by giving these babies to the right parents who would love them regardless,” Savannah replied.
These girls are truly happy for having a mom like Savannah who wants to raise awareness about Down Syndrome and teach the world that those who have it can lead a happy and fulfilling lives, just like her two beautiful angels.
For more on this family’s beautiful life story go to the video below.
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