A 15-month-old dies of red tape.

“I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need in fighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”  -Roger Gail Lyon to Congress in 1984, shortly before his death from AIDS.

“It’s a simple issue. Please don’t let my daughter die, Governor.” Father of Vivian who has Dravet syndrome, Brian Wilson, to Gov. Chris Christie

I recently became a member of a Facebook group about the use of pediatric cannabis, consisting of parents who are using medical marijuana to treat their children’s serious illnesses, as well as parents who are seeking to do so. As we live in Georgia, I fear we will be at the end of the list of states to make it available, but I’m wanting to keep an eye on things as you probably saw in my previous post. I simply don’t understand why people are so afraid of MMJ, but it’s okay that my son takes Onfi which carries this potential side effect.

Two members of the group have a daughter with Dravet Syndrome, a severe form of epilepsy. If you watched Dr. Sanjay Gupta’s special Weed, which featured Charlotte, the little girl in Colorado who had her life transformed by MMJ, you have seen what Dravet can do to a person. This family lives in New Jersey, a legal state, but one with some of the largest restrictions since Gov. Chris Christie shakes in fear that he is treading a slippery slope in which — gasp! — adults might get high just for fun. This family had just completed jumping through the hoops, completing paperwork and sending the $200 fee to the state last week. Her marijuana application is pending.

On November 27th Sabina Rose suffered a 25-hour seizure that caused brain damage and swelling. She died December 2.

But, hey, at least those darn adults can’t get high.

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7 thoughts on “A 15-month-old dies of red tape.”

  1. Heartbreaking. I do not understand why these families aren’t given the chance…but it is perfectly alright to sell us drugs with horrific side effects and at a cost that can bankrupt families. These decisions are being made on emotion (fear) rather than fact and research. Bless Sabina’s heart and prayers for her family…

  2. I am in tears reading this, absolutely heartbroken. I am so sorry for your loss. Marihuana will be legal in a few years anyway. This should have never happened. Again, I am so sorry xoxo

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