I am Bries mom, Brie is an amazing young lady who was diagnosed with a rare condition called IA (Intra-cranial Arachnoid Cyst) four years ago at the age of 12. It is a horrible debilitating condition that if not constantly monitored can lead to premature Alzheimer's and death. IA causes increased intracranial pressure, severe headaches, head bobbing, seizures, dizziness, impaired hearing and vision, vertigo, difficulty with walking, confusion, forgetfulness and stroke. Brianna lives with these symptoms everyday of her life and at her young age has survived a massive stroke which has left her weak on the right side of her body. She had to learn to walk, talk , eat and pretty much to learn everything she had learn in 14 years all over again. But she persevered and even taught herself to draw and right with her left hand. Through it all she has remained, vibrant and loving always thinking of others before herself. This condition has turned our lives up side down.
As I parent I feel helpless as I watch my child battle for her life and struggle each day. But I know than I can not and will not give up. I will never stop fighting to help find a cure for my baby and for the thousands of countless other children and teens battling IA. I have had to stop working so I can care for Brianna and the bills are mounting. There are very few pediatricians who now how to treat IA and the ones that do are out of our insurance network. I am desperate we need help !