01/05/2010 -04/14/2022
Joseph was born with a rare medical condition called cobolomine e abnormality he was the first in the US and first at birth in the world. Joseph fought a hard fight and showed them it can be done he got…
3/19/2004 - 10/01/2016
Johnathan was my first born. He was born premature and not breathing. Because of his traumatic birth, his brain endured an injury that caused a variety of disorders. One the many we would later discover was Lennox-Gastaut Syndrome. His journey…
11/25/2016 - 4/08/2022
There is so much. It was a long journey, yet not long enough all at once. For 5 years he consumed me. I will always miss him. I don’t even know what to say to explain our story. He was…
Lennox-Gastaut Syndrome (LGS) is a rare and severe epilepsy disorder that begins in early childhood and affects “approximately 48,000 children and adults in the United States” and “1 million worldwide,” according to the LGS Foundation. This constitutes for only 1…
Every mother will say their child is special. But my sweet Josie truly is. She is the definition of a warrior.
My name is Zoe Rabun and I am the mother to our beautiful daughter, Josie Rabun (3). We first noticed unusual behavior with Josie at the age of 9 months. She would wake up in her sleep and have these…
4/17/2004 - 1/14/2021
Aidan was born in Kalispell, Montana in 2004 and was a healthy, curious and very talkative little boy. He grew up loving the Montana way of life. He enjoyed camping, canoeing, collecting insects and fishing with dad. He loved books,…
6/26/1973 - 12/16/2016
Brian was the oldest of our three sons. He began having petit mal seizures (head drops) at 9 months old. On the day of his first MMR vaccination, he encountered his first tonic-clonic seizure. It lasted approximately 15 minutes. Until…
9/16/1995 - 9/13/2013
Matthew’s spirit lives on today through having touched many lives in his almost 18 years. I noticed Matt’s seizures, which presented as stretching episodes, on our first day home from the hospital. After two months of the pediatrician telling me…
Eli was born in the summer of 2003 at 34 ½ weeks old. He spent 7 days in the NICU due to a ventricular septal wall defect. By 3 months of age, it was evident that he was not meeting…
Epilepsy Awareness Month Focuses on Solving the Mystery of LGS and Other Rare Epilepsies
International LGS Awareness Day brought together thousands of people around the world to show that the challenges associated with LGS are tough, but so are those affected by this rare disease. This also kicked off Epilepsy Awareness Month – we…
