PASADENA, TX (KTRK) --For Grace, Gloria and Ascencion Rodriguez, a good day is one without a trip to the emergency room.
"They call it rare and catastrophic but I don't like to say that because it sounds --it sounds bad, it sounds sad and scary," said Gloria Rodriguez.
The truth is this is scary.
The Rodriguez's 3-year-old daughter Grace has been in and out of hospitals since she was born --her little body suffering through more than 400 seizures a day because of a severe form of epilepsy called Dravet Syndrome.
"It is heartbreaking because when your child stops breathing, so do you and it's horrible to feel helpless and there's nothing you can do," said Grace's mother Gloria.
When the seizures aren't kept in check, the convulsions can be deadly to young children. Simple things set Grace off like heat, light and noise. Because of that, her playtime is confined to their living room and her playmates are usually just her parents.
"When the neurologist told us that we need to mourn the life we thought we were going to have wit her, she was 100-percent correct," Gloria said.
Instead, the family spent their days in the exam room of specialists. However, with no change in the severity or frequency of the seizures,the parents say they had reached their last resort --marijuana.
"I even considered moving to Colorado," said Gloria. "I mean I was looking for jobs out there."
Before bags could be packed, a drop of hope reached the family. A clinical trial at Houston's Texas Children's Hospital, using a marijuana-derived drug manufactured in England.
"Honestly, I think we finally met Grace when she started CBD," Gloria recalled.
CBD or Cannabidiol is thought to have anti-seizure properties. It is also the active ingredient in Epidiolex, the strawberry-scented, liquid medication in Texas Children's Hopsitals' double-blind trial. The medication doesn't have Tetrahydrocannabinol (known as THC) in it so it does not produce a high.
For Grace, the benefit was immediate. Usually a the excitement of seeing her father Ascencion walk through the door after a day at work would make her seize but instead, "she didn't have a seizure when he got home from work and picked her up and she smiled at him," said mother Gloria. "We usually didn't have that, we just had blank-stare Gracie."
That was a year ago. Grace has been on Epidiolex ever since. Her seizures have been reduced from hundred to just a few dozen a week. It is major progress but still not something the family talks much about.
"I did have some people say 'you're going to give your baby marijuana?' and I would say yes I am, because I have tried everything else," Gloria said. "And really quickly, that shut down any conversation about it."
Researchers working on Grace's trial say Epidiolex reduced seizures by 39 percent --compared to 13 percent with a placebo. Still, the medication is a long way from FDA approval. New medications like Epidiolex need at least two successful clinical trials to get approval.
Texas Governor Greg Abbott signed legislation in June 2015 making cannabis oil available to some patients with conditions like epilepsy.
Still, Rodriguez says she would like to see Grace's medication made an option for all sick children,"I mean a year and a half a go, I thought, okay, my biggest dream is that I could get her marijuana somehow without worrying about being in trouble and here I am now."
For more information on the Dravet Syndrome, CLICK HERE. To read more about Epidiolex, CLICK HERE. Texas Children's has also provided a comprehensive look at epilepsy care on their WEBSITE.