kali rae

happy rare disease day🤍🤍
I haven’t particularly ever shared my story with anyone until a few months ago. I was born with an extremely rare disease known as lymphatic malformation. A simple definition of this is, a developmental abnormality of the lymphatic system characterized by fluid filled masses in a specific area. Mine is on the left side of my jaw-neck. There is no cause or cure of this disease, but it is treatable. I am so, so privileged to be able to get treatment in New York City by some of the best doctors in the country, and that are some of the only doctors that know how to treat me.

About three months ago, I received my 16th and 17th surgeries and I couldn’t be more thankful. Everything went extremely well and I am already fully recovered. I am so blessed to have my mom and my sister always by my side and for all of my friends and family for always supporting and praying for me. Most of all, I thank God for all of it. My life today is extremely different than what we were told it to be sixteen years ago. I am who I am today because of that and I know that I was made in the image of the Lord. I am reminded how lucky I am everyday by the beautiful life I get to live🤍#rarediseaseday2025