Jun 26, 2008 Latest post:
Mar 11, 2016
Welcome to our CaringBridge site. It has been created to keep friends and family updated on Bailynn's life and to share her with the world.
3 choices in life: give up, give in, or give it your all
Bailynn was born May 11, 2000 and at birth was diagnosed with Tuberous Sclerosis.
Tuberous Sclerosis is defined by the National Tuberous Sclerosis Association as a genetic disorder that causes benign tumors to form in any of the vital organs including the brain, eyes, heart, kidneys, and skin. It is often first recognized because of epileptic seizures and/or varying degrees of development delay.TS occurs in both sexes and in all races and/or ethic groups.There are approximately 25,000 to 40,000 individuals with TS in the United States.
Bailynn's Tubers are currently in her Brain, Heart, Kidneys, on her skin and recently discovered in her liver.
Bailynn Suffers from epilepsy and at 15 months of age had the left-side of her brain removed to help relieve her from constant seizing. Bailynn does still have seizures and has had a Vagus Nerve Stimulator implanted to help with the control of seizures. There is nothing more heart wrenching than watching your child seize.
Her current fight is against the tubers that continually form and grown in her kidneys and liver. She has a forever battle against a disorder that has no cure and has not had break throughs medically for treatments. We continue to keep a positive outlook though the days that she suffers in pain are long and hard.
Despite all of Bailynn’s continuing obstacles she continues to be a strong and happy little girl. Though she is wheelchair bound and doesn't speak, she tells the World a marvelous story of Hope and Courage.