The story of Agata

I live in Scotland in Uk but was born and grew up in Poland. When I was born my parents were told I will never walk as my spine was severely deformed. Days later the doctors diagnosis was that I had rare Klippel feil syndrome and Sprengel deformity. When I was born, Klippel feil occurred in 1 in 40000 newborn worldwide. Females were and still are to be more affected than males.  Klippel-Feil syndrome is a bone disorder characterized by the abnormal joining of two or more spinal bones in the neck (cervical vertebrae). Three major features result from this vertebral fusion are a short neck, the resulting appearance of a low hairline at the back of the head, and a limited range of motion in the neck. I was born with fusion in c2 and c3 vertebraes that limit the range of movement of my neck and back as well as lead to muscle pain in the neck and back. If you are born with Klippel feil you may also experience other abnormalities in your body. For me it is Sprengel deformity, hearing loss, unequal number of ribs. It is believed that this condition is caused by mutations in genes but I never spoke to a doctor who was entirely convinced of that. When I was little I was offered a very experimental operation to correct my spine but luckily my parents didn’t go ahead with it as it could have lead to one side of my body being totally paralysed. And that would have stopped me from doing what I love the most- running. 
I hardly ever meet others with Klippel feil. I bumped into few in different corners of the world- in Doha, Vienna and Costa Rica. I wish we all get more answers to all our medical problems and weren’t treated like curiosities.