I was born in Turkey on January 1st, 1997 with typical characteristics of a very rare genetic mutation, Weaver Syndrome: large birth size, accelerated growth, atypical face view, tall in height, big hands and feet, hypertonia, umbilical hernia, spinal deformity, weak bones and muscles, special skeletal structure and skeletal maturation etc. I’m the first Weaver Syndrome case in Turkey and 27th one worldwide. I was diagnosed in Hacettepe University, Pediatric Endocrinology Clinic. When I was one year old, I had open heart surgery due to ASD+PDA problems from birth. At the age of 3 and half, I had Umbilical Hernia surgery. After 9 months of physiotherapy at 5 years old, I was able to walk for the first time with a walker. I was under observation of Pediatric Endocrinology Department of Marmara University. I was cured for my accelerated growth since September 2003 till May 2006. In the beginning, I was 1.72 cm (5’8″) tall. Medical treatment has been successful and I’m not growing anymore. In December 2013, I had two Scoliosis surgeries in two weeks. My curve was 65 degrees before the surgery and still 38 degrees remained. My medical condition is stable at the moment and I don’t have any serious surgery or treatment coming up. In addition, I’m having physiotherapy and swimming regularly to strengthen my muscles.
I graduated from elementary school in 2011 and high school in 2016. Due to the physical challenges I have, I’ve never been to school in person but completed my education via home schooling. During the COVID-19 quarantines in 2020, I started studying Web Development since working in Tech industry was my childhood dream. Now I’m an aspiring self taught Full-Stack Developer who can build both the front end and the back end of a web application. I have three professional certificates from three different leading institutes, which the final one was Harvard University.
BEING A PUBLIC FIGURE
I received “the world’s tallest living female teenager” title in 2014 and “the world’s tallest living woman” title in 2021 thanks to my 2.15,16 cm (7’0.7″) height; and also “the largest hands (female)”, “the longest finger (female)” and “the longest back (female)” titles in 2022. All are given officially by Guinness World Records. Since 2014, I’ve appeared on various TV shows and press media as well as took part in multiple campaigns. Living with some severe diagnoses for my lifetime inspired me to raise awareness, help getting treatment options further and empower other individuals who are in similar situations. So now I’m advocating and researching for both Weaver Syndrome and Scoliosis (two diseases I was born with) and also sharing my own experiences through social media. I’m happy to be able to make this happen as it was one of my ultimate goals.