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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… Read More
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)
I never thought I would see the day of being able to meet other families that walk in my shoes daily. For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?
Today has been a stress free day, Imagine that! I have done absolutely nothing. HaHa! I have so much on my To-Do List but I took advantage of this beautiful day and decided to just sit back and laugh, play, sing, and lay around and enjoy Brently and my husband.
SURVIVING TWO THRIVING...with L1cam Syndrome 