by Jonathan Smith | Dec 19, 2014 |
ARES AND APOLLO Twins with Dravet Syndrome OUR NAMES ARE ARES AND APOLLO. THIS IS OUR STORY. Ares and Apollo are identical two year old boys. They came into the world at 35 weeks and 3 days of gestation ready to be in the world kicking and screaming both weighing in at 6 lb 7 oz.(exactly the same measurements). They were perfectly happy and healthy little boys. On the day of their 6 month immunizations we took them to the doctors office for what was hoped to be just another day of things to do as a new parent. Their immunizations occurred at 4:30 pm and mom went back to work as dad stays with the boys. Dad called mom at 7:30 pm to tell mom something weird was going on with Ares. He called the ambulance and we headed to Scottish rite for what seemed to be ‘just a seizure’. When the seizure wouldn’t stop they decided that they needed to put him into a coma to stop the seizure from continuing. This would mean that he would be on a ventilator and gone in terms of consciousness. Meanwhile Apollo was in the waiting room with mom and dad and around 10:00 pm began seizing as well. His seizure also wouldn’t stop and we were left with two little 6 month babies in comas on ventilators. They did EEG’s, spinal taps, MRI’s… all of the things to decide if there was a root cause for the seizures. After nothing was found we were told to avoid a particular immunization to help with the ‘allergic reaction’ that the boys...
by Jonathan Smith | Dec 19, 2014 |
ZOE Lennox Gastaut Syndrome MY NAME IS ZOE. THIS IS MY STORY. Zoe is 8yrs old and suffers from Lennox Gastaut syndrome and a mitochondrial disorder. From the age of 6 weeks old Zoe started having grand mal seizures. She would have up to 50+ a day. We have been on numerous seizures meds without success and also have a VNS implant and also on the ketogenic diet through a feeding tube. Still we are having 15+ seizures a day. Zoe has global developmental delay from all of the seizures and we are so hopeful that this year they will pass this cannabis oil. Our children are running out of options and are desperate for this life saving medication. READ MORE STORIES Want to become a part of the movement? Get...
by Jonathan Smith | Dec 19, 2014 |
PRESLEY Dravet Syndrome MY NAME IS PRESLEY. THIS IS MY STORY. On September 29, 2011 at 4:15 pm we welcomed our beautiful healthy baby girl into this world. It was the happiest day of my life. As a new mom my heart overflowed with love with just one look, she won me over for life. Everything seemed to be fine. About 10 hours after her first set of shots at 2 months old she had her first seizure. It lasted about 10 minutes and we were told it was just a febrile seizure and it was normal for children up to 6 years of age. I definitely didn’t take it to be “normal”. At fours months old Presley had her second seizure this one last 45 minutes and we were shipped to Memorial. Had lots of test done, EEGs, blood work, etc. Sent home saying febrile seizures. (None of it added up considering they only last a few mins and usually are from 6m-6yrs.) Wasn’t two weeks later we were back with not one, not two but three seizures in one day! More tests, spinal tap, another EEG, blood cultures, etc. This time we were sent home on her first medicine, Keppra. Every few weeks Presley was seizing, not 2-5 minutes but from 60 minutes to 4 hours at a time. At six months another medicine was added and genetic testing was sent off. At 9 1/2 months we went to Emory to search for help and answers. After 5 days at Emory with no seizures we were hole two hours Presley went into a TEN hour seizure. She turned blue...
by Jonathan Smith | Dec 18, 2014 |
ISABEL Lennox Gastaut Syndrome MY NAME IS ISABEL. THIS IS MY STORY. My name is Isabel Duffy. I’m 16 years old and I live with my grandmother. I have Lennox Gastaut Syndrome, an intractable form of epilepsy. I have had seizures since I was a baby. I have tried many drugs but none of them help; I have seizures every day and several times during the night. I have made many trips to the ER for stitches and broken bones because of the seizures. I have an aide that stays with me at high school so I don’t get hurt. I love school and I have lots of friends there. My grandmother and I want HB1 to pass so we can get my seizures to stop or at least to slow down. READ MORE STORIES Want to become a part of the movement? Get...
by Jonathan Smith | Dec 18, 2014 |
CHANCE Severe Developmental Delay, Brain Damage and Cerebral Palsy MY NAME IS CHANCE. THIS IS MY STORY. Chance was born with brain damage and has suffered seizures since the age of 6 weeks old. Joining Babies Can’t Wait {Georgia program for children up to age of 3}. At the age of 4, Chance was diagnosed with Severe Developmental Delay, Brain Damage and Cerebral Palsy. Chance is now 12 years old and has had thousand’s of seizures and has taken a cocktail of seizure medications since he was first diagnosed with Epilepsy. READ MORE STORIES Want to become a part of the movement? Get...
