This Mother was Prepared to Break the Law to Treat her Daughter’s Dravet Syndrome

According to a story from Mirror Online, Vera Twomey from Cork, Ireland, was devastated when her four month old daughter had a severe seizure that lasted 45 minutes. Before long, she was diagnosed with Dravet syndrome, and the doctors didn’t think she would live past age three. However, in 2020, daughter Ava is ten years old, and Vera’s determination has a whole lot to do with it.

About Dravet Syndrome

Dravet syndrome is a form of severe epilepsy that usually begins by the sixth month of life. The disease is most characterized by frequent seizures that are sometimes triggered by fever or hot temperatures. In most cases, the syndrome is caused by mutations of the SCN1A gene. Most of the time, these mutations are not heritable and appear spontaneously. The predominant symptom of Dravet syndrome is seizures; varying types of seizures often occur as the disorder progresses, as well as ataxia, developmental delays, behavioral disorders that may resemble autism, and cognitive impairment. Seizures can be potentially lethal. Management strategies for Dravet syndrome may include a ketogenic diet, anticonvulsant medications, cognitive rehabilitation therapy, and cannabidiol. This rare disorder is estimated to appear anywhere from 1 in every 20,000 to 1 in every 40,000 births. To learn more about Dravet syndrome, click here.

Ava and Vera’s Story

Ava began having frequent seizures almost constantly, but though she was prescribed a variety of medications, they failed to have any effect. As Ava continued to decline and miss critical developmental milestones, Vera knew that her daughter’s future would be dire if something didn’t change. It was then that she learned through Dravet syndrome Facebook groups that cannabis could help treat the seizures associated with the disorder that other drugs couldn’t.

In 2016, Vera started a petition so that her daughter could legally access cannabis. In September 2016, cannabis oil was legalized as a supplement in Ireland. A small dose of CBD oil twice per day sharply curtailed Ava’s seizures. However, Vera learned that the best effect required a combination of CBD and THC. In November, Vera walked 200 miles to Parliament in order to raise awareness about the need for changes in the law so that Ava could get treatment.

The health minister said that she would look into the case, but after a four month delay, Vera started to get desperate again. She conducted another walk to raise awareness, but to no avail. In April 2017, she attempted to purchase THC oil from Spain, but it was taken up by customs. In June, the family moved to The Hague after a painstaking crowd-funding effort so that Ava could get treated legally. After a six month stay, the Health department finally gave the family a license so that the treatment could happen in Ireland.

Now, Ava lives a life that is free of seizures 95 percent of the time, which is excellent for someone with her diagnosis.

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