Budd–Chiari syndrome is a very rare condition. It is an uncommon condition induced by thrombotic or nonthrombotic obstruction of the hepatic venous outflow and is characterized by hepatomegaly, ascites, and abdominal pain. It is caused by blood clots that completely or partially block blood flow from the liver. It usually occurs when a clot narrows or blocks the hepatic veins, which carry blood out of the liver.
Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love two special RARE people in this life. This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make when they think no one is watching, listening, or even signing a new sign after teaching it to them over and over and over again. Sometimes it can feel like your not winning this battle and then all of a sudden…. he signs….
I think I am drowning in my own sorrow. I’m the lady who can handle everything that comes her way…. ya, NOT so much! I am drowning. I pick myself up off the ground every single day hoping that I have made some sort of difference in a person’s life. My son’s life. His life matters! Brently’s life does matter! He has a purpose! God says he does. (Jer. 29:11)