Local Family Fights for HB 2107 – Legalizing Medical Marijuana

Posted by  | May 9, 2017 here

Currently, HB 2107 is making its way through the legislature. House Bill 2107 refers to the authorization of possession, use, cultivation, distribution, transportation, and delivery of medical cannabis for medical use by qualifying patients with certain debilitating medical conditions and the licensing of dispensing organizations and testing facilities.

One local family is sharing their story on how this bill would change their lives, and recently shared at the Texas State Capitol to those who can make it possible. Read their story below.

Dusty and Meagan Cheney were both raised in Paris, TX and now live with their children in Colorado.

The Cheney’s were living in Texas in May of 2015 when their daughter Austen was born, a normal and healthy little girl.  At five an a half months Austen started seizing, and after one seizure turned to four within a two day period it became obvious that something was seriously wrong.

Over the next several months Austen kept on having seizures, but neither she nor her family would give up. After two medication changes, two neurologists, 2 MRI’s, 2 EEG’s, a CT, and lots of blood work Austen was diagnosed with Dravet Syndrome.  She was 11 days from turning one year old.

Dravet Syndrome is a catastrophic form of epilepsy caused by a mutation in Austen’s SCN1A gene. There is no cure, and a child’s seizures typically get worse as new seizure types develop. The odds are 1:20,000, so low that no one in her small hometown of Paris, TX had ever even heard of the disease. Austen’s parents were told that with mainstream meds Austen would almost definitely continue to get worse, and her cognitive function would also start to decline. Within a year she might be having up to 100 small seizures a day.

They knew there must be answers.

Three weeks after Austen’s diagnosis was received her family packed up and moved 750 miles away from their family, their friends, and their entire support system to gain access to medical cannabis for Austen. It was a risk like none they ever thought they would face, and they knew it wasn’t a cure. Nothing can give Austen a shiny new SCN1A gene, but they had to be able to say they had tried everything to give their daughter the best chance of a life worth living possible.

CBD alone didn’t help Austen. With CBD Austen was having large seizures anywhere from once a month to once a week, and she was having smaller ‘eye flutter’ seizures anywhere from 50-100 times a day. Texas’ Compassionate Us Program would not have helped Austen. Phenobarbital didn’t help Austen, Keppra didn’t help Austen. Diazepam and Klonopin helped to stop seizures as they were happening, but nothing helped to lower the number of seizures Austen was having.

Nothing except THC.

Since starting THC Austen’s seizures are decreasing, and while the disease is still progressing it is not progressing at the rate the doctors originally thought it would. Last fall she even went 48 days without a seizure, a huge feat when you think of how many she was having a day beforehand. Although a growth spurt brought her seizures back to every 4 days in February, an adjustment of her cannabis has them back to once a month on average now. And she hasn’t had an eye flutter since August.

Before THC Austen’s seizures lasted on average of 11 minutes and could go up to 35 minutes or more. Now her average is 2 minutes, and her THC rescue nasal spray stops the seizures better than her previous rescue drugs without incapacitating her for an entire day.

“THC can’t cure Austen, but it has given her a shot at a normal life. Right now she is cognitively normal, something we were told would not happen at this age.”

“This month Austen turns 2, and thanks to THC we look forward to many more years to come.”

What people may not realize is that Austen does not smoke cannabis. While many people believe this is how it is taken, it actually comes in oil form and she takes them just like she takes Keppra and her nasal spray is a mist.  While many patients do smoke their cannabis, just as many (especially pediatric patients) use oils, salves, and edibles to help with their conditions.

Meagan recently shared their story at the Texas State Capitol to urge movement regarding HB 2107. To hear her story, see the video below.