Yara's Story

I am Yara Jaafar from Lebanon. I was born on February 7, 2020.

It seems that my story started even before I was born but no one knew why... Yes, I wasn't developing normally in mama's womb and was only 1,980 kg when I was born. I also have 6 toes. I stayed 16 days in the incubator and kept on losing weight. Then when I came home, mommy started realizing that I didn't really interact with her... I basically never smiled to anyone. She kept an eye on me until I became 3 months old and that's when I had my first visit to the neurologist who through the MRI told mommy that I have a rare brain damage called closed-lip schizencephaly. I started physiotherapy at the age of 4 months. In the meantime, I wasn't gaining weight and height, so I started feeding therapy. I started eating mashed food at 3 months but wasn't able to drink milk!! Accidentally, mommy took me to a cardiologist who discovered another rare malformation, a vascular ring (my aorta was wrapped around my esophagus). I underwent a surgery when I was 5 months old. I had my first occupational therapy session when I was 7 months old. The result of the genetic testing came out and diagnosed me with ZTTK and that's when all the external and internal abnormalities were answered.

Mommy kept on reading about my Syndrome until she found a Facebook group which really helped her to understand and know how to deal with me a lot. I interacted with my family for the first time when I was 10 months old.

I am now 1 year old (5.8 kgs and 61 cm)... I have visited all different types of doctors in this short period... I have a triggering finger (the ring finger) and verrrry dry skin. I almost ignore the left side of my body (but mommy forces me to use it!). I haven't reached a full head control yet but I am working hard to do so soon.

So far these are the only abnormalities in my body... I have my cute eye glasses on all day long and I'll be starting hormonal shots next month (my family are so excited!!). I do PT and OT once a week and FT once a month. My next appointment is with the orthopedist to see what new things might be discovered in me.

This is me Yara... the family's blessing and the heroine of all time as all the people who know me describe me..