The story of Kali
My name is Kali and I was born with a lymphatic malformation of the neck and jaw. When I was born, the mass my lymphatic malformation formed, was almost down to my belly button. Doctors at home had told us that the only thing they could do for me, was insert a trachea. My parents then searched all over the country, from hospital to hospital to try anything else they could. We got recommended to a doctor in New York City and that is when everything changed. My parents and this doctor saved my life and I couldn’t be more thankful. I still see this doctor to this day for surgeries and injections. Growing up with a rare disease wasn’t easy because I thought I looked so much different than everyone else and I hated it. The mass on my neck had caused my jaw to overgrow and be asymmetrical . I am now 16 years old and love the way I look. All my life I have overlooked my rare disease when it is actually a blessing. It has made me who I am. Now that I am older, I love learning more about it and educating others as well as raising awareness. The truth is we are all beautifully and wonderfully made!