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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Anne Hathaway Shares Painful Memories of Losing an Unborn Baby
Anne Hathaway reflects on her challenging journey to motherhood and the heartfelt influence her openness about her experience has had over the years.
Oscar-winning actress Anne Hathaway, who is a mother to sons Jonathan, 8, and Jack, 4, with her husband Adam Shulman, recently looked back on her challenging journey to motherhood. She shared how she faced a miscarriage while performing in the Off-Broadway play Grounded for nearly six weeks in 2015.
Reflecting on her experience, she told in a cover story published on March 25, «The first time it didn’t work out for me. I was doing a play and I had to give birth onstage every night.»
During that time, she felt that «it was too much to keep it in when I was onstage pretending everything was fine,» and chose to be honest about her struggles with her friends and family. «I had to keep it real otherwise.»
Later on, she extended this same openness to the public when announcing her pregnancy. She explained, «When it did go well for me, having been on the other side of it — where you have to have the grace to be happy for someone — I wanted to let my sisters know, ’You don’t have to always be graceful. I see you, and I’ve been you.’»
«It’s really hard to want something so much and to wonder if you’re doing something wrong,» she added. The Oscar winner further recalled her shock at learning how many pregnancies end in miscarriage. According to the Mayo Clinic, 10% to 20% of known pregnancies end in miscarriage, though the actual number is likely higher. She wished that this information was more widely disseminated.
Anne continued, «I thought, ’Where is this information? Why are we feeling so unnecessarily isolated?’ That’s where we take on damage. So I decided that I was going to talk about it.»
When Anne Hathaway announced her second pregnancy on Instagram in 2019, she accompanied it with a powerful caption.
«It’s not for a movie…» Hathaway wrote, referring to her baby bump. «All kidding aside, for everyone going through infertility and conception hell, please know it was not a straight line to either of my pregnancies. Sending you extra love.»
Reflecting on the impact of her candid post, she shared, «The thing that broke my heart, blew my mind, and gave me hope was that for three years after, almost daily, a woman came up to me in tears and I would just hold her, because she was carrying this (pain) around, and suddenly it wasn’t all hers anymore.»
Reflecting on her experience, she shared that given «the pain I felt while trying to get pregnant, it would’ve felt disingenuous to post something all the way happy when I know the story is much more nuanced than that for everyone.»
Recently another actress, Nicole Kidman, also shared her struggles having children.
Preview photo credit Siegfried Nacion/STAR MAX/IPx/Associated Press/East News, annehathaway / Instagram
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