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Going the Distance to Save Your Child: The Struggle of Vera Twomey

By: Jon Hiltz

Today is International Women’s Day, and as we celebrate the successes of women around the globe as well as push forward with much needed reforms for greater equality, there is a woman in Ireland who is a fantastic example of commitment and dedication — a mother trying desperately to save her child’s life.

Vera Twomey has a daughter named Ava who suffers from Dravet Syndrome, a rare form of epilepsy that is often treatable using medical marijuana. Twomey just yesterday completed a 162 mile walk, with the last part of her journey in a wheelchair due to a knee injury. The reason for walking this incredible distance was to bring attention to the lack of access for medical cannabis products in Ireland.

Ava Twomey, a seven-year-old with an infectious smile, uses the CBD oil Charlotte’s Web to control her seizures. After no other medicine proved effective, the CBD oil managed to lower Ava’s seizures to about seven per month. Previous to that, Ava could suffer from seven seizures in an hour and over twenty in one day.

When Marijuana.com spoke with Vera in December of last year, the Government of Ireland had just unanimously passed the first reading of a bill to allow medical marijuana in the country. This incredible win was a result of a 14-month battle to convince the government that cannabis access was the right thing to do for its citizens. Unfortunately, that vote was not the end of the long struggle for Twomey and her family.

“The bill went to the second stage in the Dail [Irish Parliament], that means it had to go through a number of other stages before it passed into legislation.” Twomey went on to add that the bill is now at the third stage, but due to government tactics by politicians who do not agree with legalization, progress has stalled and medical marijuana is still not legally available in Ireland — only CBD oil is legal.

Twomey further mentioned that from her extensive research, a combination of CBD oil with THC was a one-two punch that could render Ava and other children like her, with little to no seizures at all. “There is plenty of evidence and proof around the world of how effective CBD oil is once THC is introduced.”

“We were told last June by Health Minister Simon Harris, that we should get a pediatric neurologist to put in an application for a compassionate exemption order for medical cannabis,” said Twomey. “I spent the summer looking for a pediatric neurologist that would prescribe and put in the application for Ava. No pediatric neurologist in Ireland [was willing] to put in an application for medicinal cannabis because the THC level that’s necessary exceeds the legal amount.”

After going in circles, desperately trying whatever they could to push things forward, Vera finally met again with Health Minister Simon Harris two weeks ago. She was again told that they would need a pediatric neurologist to submit an application on their behalf, which of course, had lead to a dead end before.

“I knew that when Ava’s application was rejected, what I needed to do. We left the meeting and went home and decided that we would begin to walk.” Twomey was joined on the walk by Member of Parliament, TD Gino Kenny, the man responsible for putting forth the medical marijuana bill in the first place. “He told me to not start walking until he could get on a train from Dublin to come down and begin the walk with me. We arrived nine days later in Dublin.” By the time Twomey reached the Parliament buildings, she had two and a half thousand supporters walking with them.

As it is very hard to ignore a crowd of thousands of people, Twomey and her husband as well as Gino Kenny were admitted into the building where they had a five-hour meeting with Simon Harris. The meeting was attended by various government officials which included cross-party members and health officials for the country. “[We discussed]  the compassionate exemption program they were rolling out and the bill for the legalization of medical cannabis.”

So where does this leave Twomey and her family during this intense process of trying to secure needed medicine for her ailing little girl?

“We are actually in the government buildings at the moment waiting for them to come back to us.”

As another day comes to a close in Ireland, another day passes without Ava receiving the necessary medicine that could potentially render her condition almost moot. We end this story as it began, with a mother and her family’s heart-wrenching struggle to make the government understand the importance of bringing forth this life-saving medicine now.

We can only hope that a new day will bring a more open-minded and faster process to the important task at hand.

Good luck Vera Twomey, we are with you all the way.

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