Dana Haddox-Wright had an incredibly memorable weekend. Not only did she run the Redding Road Race half-marathon on Sunday, May 1, raising over $4,000 with her team of friends to benefit the Dravet Foundation, but she had another victory that just might have been even sweeter.
Dana is mom to 6-year-old Ella Wright, who lives with a life-threatening, severe form of epilepsy called Dravet Syndrome. For the last several years, Dana has dedicated herself to advocating for the passage of laws in CT to allow children with debilitating conditions and life-threatening diseases access to medical marijuana.
After the CT House of Representatives passed the bill (House Bill 5450) on April 20, it was finally approved in the State Senate just last Friday, May 1 by a vote of 23-11. The law will now go to Governor Malloy, and if he signs it the new law would take effect Oct. 1.
Dana was elated by the vote and grateful to those legislators who supported its passage.
“I am extremely proud of the esteemed members of the House and Senate who voted in favor of Bill 5450, allowing it to pass. It was a relief that a majority of our legislators acknowledged that medical professionals and parents should be trusted with making the decision to try medical cannabis for stopping seizures and alleviating suffering for our sick children. I know I speak for other parents when I say, ‘thank you’ to all of the Representatives and Senators who were considerate of their constituents when voting on this Bill,” she said.
Of Wilton’s representatives, State Rep. Gail Lavielle (R-143) offered testimony in support of Bill 5450, and State Rep. Tom O’Dea (R-125) joined her in voting in favor of its passage. On the contrary, however, State. Sen. Toni Boucher (R-26) led efforts to defeat the bill in the senate.
Lavielle testified that after “very long and hard thought — harder and longer than I might have normally,” she considered how strongly parents had advocated to be able to make the choice of using medical marijuana as a treatment for their children. She said it would be “supreme and egregious arrogance” to be the one to make that decision about what is best for those children.
“I know that parents of children with severe epilepsy or any type of serious seizure or neurological disorder are willing to try anything that might work — anything that might calm their children’s pain, relieve their distress or decrease the frequency of their troubles. I know these parents worry every day, every hour that their children will suffer another episode and that it will be different than anything they’ve experienced before. I know many of them give their children medications that cause grave side effects and that may pose long-term dangers, and I know they’re not interested in putting their children in danger. On the contrary, they want to save them from pain and suffering.”
Lavielle said she supported the bill because she feels the choice belongs to a child’s parents made in consultation with a child’s doctors.
“I am not these parents, these are not my children, and they are not my patients — and I have to ask myself, Who am I to tell them what to do? As of now, there is so much we don’t know, but when someone very dear to you is facing great suffering and terrible uncertainty every day, you’re willing to try anything that may help, and if there is an alternative that may give you hope, then that is a choice that should be yours.”
In speaking against Bill 5450, Boucher said, “More research must be done by reputable scientists, not a dispensary, before a child’s brain is experimented with. Dispensing pot to young children is too risky and we should undertake no legislative effort that would expose our children to unnecessary risk.”
Earlier this year, Dana made a passionate plea about why she felt so strongly about getting the measure passed in the CT General Assembly, especially in light of the potential dangers and damaging effect of the medication children like Ella take.
“Children suffering from seizures are most likely on medication or diets that are more harmful than marijuana would ever be. Where these types of seizures could kill them, the accessibility of medicinal marijuana could actually save their lives.”
She also spoke to statements used to try to defeat the bill’s passage.
“Using the word ‘pot’ is intentional to turn people off. We, the parents, see it as a legitimate and potentially effective form of seizure control. Let’s change the language. Kids will be getting ‘cannabis oil.’ Cannabis is the plant name. They are treated with the oil that does not ‘get them high.’ Children aren’t going to a dispensary to pick up little baggies filled with pot flakes so that they can take it home, roll it up and smoke it,” she says.