Our son was born with an enlarged tongue, at birth he was given a diagnosis, then at 5 months old a trip to the ER due to tip of his tongue turning black lead us to the findings that he was not correctly diagnosed. After imaging and multiple doctors he was officially diagnosed with Lymphatic Malformations, these are clusters of abnormal lymph vessels that form a growing, disorganized, spongy cluster of cysts that appear as masses, but are benign. Remi has 3 of these malformations with his tongue being the largest and most concerning. Our local doctors in southern Indiana area had not seen a case like him so we are having to receive care for him in Philadelphia, Pennsylvania. This is a rare condition and we just want to raise awareness for those around so when they see someone out who may look a little different, be kind, don't be quick to judge or say the wrong thing. We never know what a person is going through. This journey is not easy but we are working through it each day.

"The Lord is my strength & my shield; my heart trusts in Him & he helps me. My heart leaps for joy and with my song I praise Him."

Psalm 28:7