Meet Ella Wright. This adorable 6-year-old Wilton girl lives with uncontrolled seizures caused by a very rare form of epilepsy called Dravet Syndrome. Her seizures are so extreme, they can potentially kill her.
For the last several years, Ella’s mother, Dana Haddox-Wright, has been advocating to get pediatric medical marijuana use legalized in CT. A measure last year was defeated in Hartford, but there is new legislation that will be considered in the coming legislative session. While the American Academy of Pediatrics opposed last year’s measure, the new proposed law has the backing and support of the AAP’s CT Chapter. The new law would allow minors with one of six different conditions—including terminal illnesses and life-threatening condition’s like Ella’s—to access non-smokable forms of medical marijuana.
While medical marijuana is legal in CT when prescribed for adults 18-and-older, prescribing it for children is illegal. Many other states already allow such treatment. From the Washington Post: “Since 2014, 17 states have legalized the use of marijuana-derived cannabidiol (CBD) for children: Utah, Wyoming, Wisconsin, Iowa, Missouri, Oklahoma, Texas, Louisiana, Mississippi, Alabama, Tennessee, Georgia, Florida, South Carolina, North Carolina, Kentucky and Virginia. The laws are intended mostly to treat intractable epilepsy and, in some cases, other conditions. Florida, Georgia and Louisiana, for example, allow limited medical marijuana use for cancer treatment.”
Haddox-Wright wants those who oppose legalizing any form of marijuana and who have likened this legislation to “dispensing pot to minors” to understand the difference.
“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.
One other thing Haddox-Wright wants people to know: “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.”
Ella’s mom has submitted testimony to CT’s Public Health Committee for today’s hearing on HB 5450, “An Act Concerning the Palliative Use of Marijuana.” She has allowed GOOD Morning Wilton to reprint it here.
Dear Committee Members,
I would like to thank the members of the committee for raising another bill that would allow children in need access to medicinal marijuana. I am writing as the concerned parent of a young child who suffers from uncontrolled seizures. I have a six year old daughter who lives with Dravet Syndrome. Dravet Syndrome is a very rare and severe form of epilepsy, which is remarkably resistant to traditional pharmaceuticals. It presents within the first year of a baby’s life, and begins with prolonged seizures that are difficult to stop. My daughter has been intubated four times and has stopped breathing five times. She typically has absence seizures, but has had all other types (myclonic, atonic, tonic clonic, etc). Her longest seizure was a grand mal that lasted over two hours. She nearly died from cardiac arrest. To this day, she has never had a seizure that stopped on its own. Each seizure requires emergency intervention.
Dravet Syndrome affects children in different ways:
- Causes regression in fine and gross motor skills
- Leads to loss of cognitive skills.
- Weakened immune systems, leading to more seizures.
- Higher mortality rate due to prolonged life-threatening seizures (Every month, a minimum of one young child dies from this awful disease due to complications).
This condition is devastating. I have lost count of how many seizures my daughter has had, along with how many ambulance rides and hospitalizations she has had to endure. I can honestly say that our entire family is in constant fear for her life. It has been over 4 years since I have been able to sleep without worry.
- She is on three medications and two supplements, which adds up to 15 pills per day (side effects include: permanent brain damage, aggressive behavior, increased or decreased appetite, loss of balance, fatigue, inability to sweat, cognitive impairment, loss of liver/kidney/pancreatic functions, etc).
- She is on a strict medical diet called the Ketogenic diet, which requires my husband and me to carefully measure all of her meals on a gram scale (side effects include: slow growth, kidney stones, loss in liver and kidney function, acidity of the blood, etc).
- Has seizures no less than once a month despite all of her medications and supplements.
The passage of Bill 5450 is necessary. The current approved pharmaceuticals are not sufficient at treating my daughter’s disease. She currently has the choice between suffering through multiple uncontrollable seizures, or ingesting toxic chemicals that do not control her seizures completely. My daughter deserves access to another option, a natural treatment that has no proven negative side effects. It is necessary to study the entire cannabis plant for its efficacy in treating this illness. It has been used in children with Dravet Syndrome and other illnesses in Colorado and has been found to be successful most of the time. It has not been FDA approved but it is giving families hope. In a life where I am facing my child’s mortality on a daily basis, it is necessary to find the path towards hope. I want my daughter to live a life where she can play outside, where she can eat normal food, and where I can sleep at night knowing she will be safe while she sleeps.
Please do not let fear of the unknown sway your decision. I have to live with this fear every day. At 10 months old my daughter was prescribed a medication (Keppra – Levetiracetam) that had only ever been prescribed to adults. We were told by the prescribing neurologist that although it had not been researched nor was there any literature for use in children, they believed it was worth trying. How is pediatric use of medical marijuana any different? Our children are medically fragile, not future drug dealers as some fear mongers might state.
As a parent of a child who would most definitely benefit from the use of medical marijuana, I urge you to consider passing Bill 5450. I, along with other parents of children with Dravet Syndrome and other potentially fatal conditions in Connecticut, have only the best of intentions for our little ones. Many of the children who have access to medical marijuana have been able to decrease their daily medications and/or end them completely.
Thank you all so very much for raising this bill. My daughter and the other children suffering from life-threatening conditions deserve better. They deserve more options than what have already been proven to fail. All it takes is one uncontrollable seizure for my daughter to be taken from us.
Thank you for your consideration,