OUR STORIES.
OUR DIFFERENCES. OUR BEAUTY.
  • Everyone meet Zali! She comes all the way from across the pond in Australia. Zali is no stranger to the Facial Difference community. 13 days after her birth Zali suffered trauma to her face which resulted in partial third nerve palsy making one of her eyes nonfunctional. However, at 41 years old Zali who is an educator, counselor, and serves as Director at Karibu Anawim “Welcome to The Way of Victory”,  remains strong in her identity and her facial difference.

     

    Zali has always recognized the importance of education inside and outside of the facial difference community.  In currently pursuing her doctoral studies, Zali remains one of the few individuals in academic studies to research Facial Disfigurement. Having first-hand experience in living with a Facial Difference Zali hopes to expand the market research on this small but rare community. She states “ Being an insider gives me first-hand experience and knowledge which an outsider, dare I say it… does not have. With anything, it is through education we raise awareness. I am blessed to be given this opportunity to hopefully serve many, many people and families around the world.”


     

    In asking Zali about how being different has impacted her especially living in a country outside of the U.S. shes states “ I don’t believe that being in Australia (as I am Aussie) is any different

    to being in the U.S. or for anywhere in the world in fact. Social stigma is still a social stigma.” Whether you live in a neighboring state or live in another continent negative stigmas affect us all!  Zali’s global perspective confirms that through education we have the power to not only change the world around us but to shape the mindsets and perspective of our peers. We have the ability to turn negative stigmas into positive ones.  When She is not busy studying or being a mom to her adorable yet spunky five-year-old daughter, Zali strives to continue to help reshape the meaning for many on what it looks like to live with a Facial Difference. Zali is Definitely a Beauty with a Twist she is using her Facial Difference to help reshape the world!   

     

    To learn more about Zali her amazing research you can access her published work through the link below:

    https://nsuworks.nova.edu/tqr/vol23/iss10/6/


    You can also follow her on Social media at https://www.facebook.com/karibuanawim/

    Reshaping the World: One Study at a time!

  • Erica is the Executive Director of the Children’s Craniofacial Association based in Dallas Texas, and she is absolutely one of my favorite persons. Erica has a heart of gold and uses her position to not only aid families in the craniofacial community but uses her generous heart to help spread the message of kindness.  

     

    In talking with Erica about who inspires her she says Hillary Clinton is one of her role models whom she happens to share a birthday with—talk about girl power. In her role as Director over a rapidly growing Non-Profit Organizations Eric shares that her passion behind her work is fueled by the love for people. she states “I realized I wanted to use my education not to increase the profits of shareholders – though that is perfectly admirable – but rather to increase the ability of nonprofits to serve more people.  

     

    Talk about being a Beauty with a Twist. She’s not only beautiful on the outside but she is actively using her difference to change the world, one organization at a time!  

     

    To learn more about Children Craniofacial Association you can visit or follow them at www. https://ccakids.org/ or you can follow them here on IG @ccakids.

    MEET WORLD CHANGER: ERICA MOSSHOLDER

  • Here's another Beauty with a Twist – Jasmine!  Jasmine was born with a rare disease known as Arteriovenous Malformation (AVM). Diagnosed at the age of eleven this beauty experienced a drastic change in her facial appearance. However, despite her lif-changing experience she never let her facial anomaly define who she was.

     

    Jas is the embodiment of RESILIENCY! She quotes “For me, resilience is about both surviving and thriving. I have had a lot of unexpected setbacks with my illness (waking up with half of my face missing, realizing my right side would always be paralyzed, that my jaw would be locked going forward, physical pain, social outcast, etc.). These things could have broken my spirit…Resilience is about being able to turn challenges into opportunity.” And this is precisely what this Beauty with a Twist has done.

     

    She is using her difference to change the world! In using her medical challenges as a platform, this Beauty gives hope to children and others alike in her philanthropic efforts. In running her favorite non-profit organization Jaz Jammies, she focuses on giving back to children in the hospital you can learn more about her efforts at www.facebook.com/JazJammies.

     

    New upcoming projects? Jaz has been featured in the newly released book Storealities available now http://a.co/aoYNhhb.You can follow Jaz on these social media handleshttp://instagram.com/jazgraydriven and https://www.facebook.com/jazgraydriven

    SAY 'HEY' TO JAZ GRAY

  • Olivia Rae @queenlilfoxy . Olivia is 10 years old and was born with a rare craniofacial condition Treacher Collins syndrome. However, despite this little beauty medical challenges she continues to let her difference light up any room.

     

    In her spare time she enjoys horseback riding and reading. Her favorite books are Wonder by RJ Palacio and El Deafo by Cece Bell. She is using her difference to change the world

    A'RAE' OF SUNSHINE

  • Lucy is 8 years old and has a rare disease known as Spinal Muscular Atrophy also known as SMA.

     

    I started following Lucy and her mom's Journey on Instagram @chertlunt about a year ago. I fell in love with Lucy's mom transparency and Lucy's beauty, personality, and spunk. Although she is disabled she daily uses her difference to change the world. Lucy and her mom's show so much transparency about her condition on social media.

     

    They are not only educating others about this degenerative disease, but they are breaking barriers every day for SMA families. Lucy was told she wouldn't live past the stage of infancy. However, she continues to defy the odds. This is what I call a BEAUTY with a TWIST she's using her difference to change the world! "Let your Difference change the world!”

    I LOVE LUCY!

  • Meet Emily! She is 14 years old and has Golden Har Syndrome. I came to know this sweet girl last year at the Children's Craniofacial Retreat. A few months later Emily reached out to me asking if we could be friends! 

     

    Emily is what I like to call a Golden Girl she radiates from within. Although she faces many medical challenges especially when it come to her hearing and speech this girl is unstoppable! She enjoys swimming and spending time with her service Dog hank (who is adorbs).

     

    When not in school Emily also helps to spread the message of Kindness. She visits local schools and shares with them the "Wonder" curriculum. This is what I call a Beauty with a Twist! She's not hiding her difference, but she is embracing it and using it to change the world. 

     

    You can follow Emily at @em.the.warrior and her dog hank too @servicedoghank 

    GOLDENHARGIRL

  • So, here’s a cool story. Nicole and I meet two years ago at the Children’s Craniofacial Retreat in Reston Virginia and we automatically clicked. We were like two kindred souls who’d known each other our whole lives. Anywho, we spent our time at the retreat talking about life, career goals, boys and eating amazing food and traveling. 

    However, we had no earthly idea that we grew up in the same city 30 minutes away from each other. It took an event over 3,000 miles to have us to meet and form a friendship.

     

     Nicole is a 25-year-old grad student/photojournalist/ world traveler and she was born with a rare facial difference called Pfeiffer Syndrome.  In asking Nicole about her favorite country to visit and how traveling has shaped her worldview, she simply says:

     

    “I lived in Norway for a year and a half as a missionary (and I’m visiting again as I type this!)— in many ways it feels like my home away from home. I love the Norwegian landscape and lifestyle. To give you an idea of how they balance the eco-friendly, healthy lifestyles with coziness and indulgence, their number one chocolate bar has hiking tips on the inside of the wrapper!”

     

    Nevertheless, despite Nicole’s love of different cultures and people, being a world traveler and having a facial difference comes with its challenges as well. Nicole confesses that she struggles at time with her appearance and that she suffers from Body Dysmorphic Disorder—a mental health condition that causes one to fixate over their alleged flawed appearance.  She states that in despite her insecurities she believes in a “good God and a good therapist.”

     

    Nicole doesn’t let her personal struggles weigh her down, she chooses to see the great value in others at all times. She admits that although having Pfeiffer Syndrome is difficult, it has given her the ability to see the beauty in others. She lists one of her life mantras from the Little Prince “It is only with the heart that one can see rightly; what is essential is invisible to the eye.” I’ll stand by that forever.

    NICOLE HILTON

  • Once a month we will be featuring an individual that is using her “Difference” to change the World. Many of the women we feature her on the Our Stories series have disabilities, chronic health conditions, facial differences, and all that in between. However, despite their medical challenges they daily show strength and grace and use their differences to change the world around them.  

    Today we’re focusing on individuals with invisible “Differences”—Invisible Disabilities are medical conditions and disabilities that are not immediately apparent. It is estimated that 96% of people with chronic medical conditions live with an illness that is invisible.  Here is a woman that I have come to know, and her strength and fortitude are something to be admired,

     

    Everyone meet Toya, she was recently diagnosed with Chron’s Disease— a chronic inflammatory disease of the digestive system.  Although, she was recently diagnosed at the beginning of the year, she believes that she has dealt with this disease unknowingly for her entire life.  By day her profession is an Accountant, however, she is also a loving mother to her 10-Year-old daughter Free.

     

     In asking Toya about her journey in living with an invisible chronic medical condition, she mentions that at times it can be hard. She says “The most difficult part of having an invisible disability, is that it’s not noticeable when I'm suffering, you can't "see" Chrons disease. Nobody knows the difficulties that I sometimes face, unless I tell them, and most times I won't. I simply do what is necessary to keep it moving.”

    Nevertheless, Toya has a relentless spirit, and doesn’t let much weigh her down. Even though keeping up with her various doctor appointments, and the constant lab work can be draining, its her daughter that keeps her going. She exclaims, “I absolutely adore her and if for no other reason, I fight, put on strength, and tackle each day as it comes with her in mind. She knows what strength looks like, because I show her through my everyday life.” Despite her invisible Difference Toya strength and relentless perseverance is not only changing her world but, it is changing her daughter’s world too.

     

    In asking Toya one of the biggest adjustments she has had to make in living with Chrons disease she says it’s her diet. Her and her daughter Free have had to do a complete lifestyle change, but its for the better. She says “My daughter has always had a love for fruits and vegetables, so it has not been a difficult adjustment at all; it’s fun! She assists me with everything from grocery shopping to meal prep. We come up with new ideas for our meals and it has also been cool exploring new foods together.

    Toya is definitely a Beauty with a Twist she is using her invisible Difference to change the world!

    TOYA SCHO

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