In 2010, four months old Ava Barry began having seizures—dozens of seizures. The little girl would endure thousands more, including two heart attacks, due to the nightmare going on in her brain.
Diagnosed with Dravet Syndrome, her mother, Vera Twomey, listened to the doctors as her infant daughter was initially prescribed phenobarbital, a highly addictive benzodiazepine.
Eleven medications in all were eventually prescribed and exhausted, to no avail. The list included Benzodiazepines, Frisium and Rivotril, phenobarbital, Keppra, Topamax, Stiripentol, Zoegran, Rufinamide, Epilim, Lorazepam and Phenytoin.
“There was a time when Ava was taking 15 tablets a day of pharmaceuticals, but they never stopped the seizures entirely” she shared. “The side effects of the drugs actually set her back developmentally—and did more harm than good.”
At the time of diagnosis they were told by a neurologist that Ava would never walk or talk, and that she would be in a wheelchair in residential care for the rest of her life.
After suffering for five years with no help in sight, in 2015, news came from America about a type of cannabis oil high in the compound, cannabidiol or CBD, with trace THC and little to no psychoactive properties. The oil had been given to Dravet patient Charlotte Figi in Denver, Colorado, with great success, with the plant becoming her namesake, Charlotte’s Web.
In September of 2016, Twomey spoke to Joel Stanley of Charlotte’s Web at the Hemp shop on Capel Street in Dublin, Ireland, where she was able to purchase a bottle of Charlotte’s Web CBD oil.
“The Dravet community is small, but it’s global. Word traveled to us about Charlotte,” she said. “Joel’s caring attitude and experience solidified my confidence that I was doing the right thing in giving Ava CBD oil. We decided to ask our trusted neurologist about using it for Ava.”
Ava’s private neurologist listened as she and her husband, Paul, suggested the use of CBD with a small amount of THC, as a treatment option for their daughter.
“He seemed on board, but could not help us, as CBD was considered a food supplement only at that time in Ireland, and what we could get didn’t have the full spectrum of compounds,” she explained. “We were expected to accept the fact that we’ve exhausted every medication out there without being able to try alternative therapies. I can’t tell you the feeling we had, knowing our beautiful little girl could die at any time, and there might be help out there, but there was nothing we could do about it.”
Vera Twomey’s Time to Woman Up
Twomey decided she would make a direct appeal to the Minister of Health, Simon Harris. The mother of four, who had never before spoken publicly about anything, let alone her daughter’s struggles, decided to use social media to circulate a petition to help garner public support for Ava.
“It really didn’t matter that I was shy or often nervous in public, my daughter was going to die if we didn’t get her the help she needed and deserved,” she shared. “We were lucky we didn’t lose her after the cardiac arrest—it was time to ‘woman up.’”
It took months for Twomey and her husband Paul to get a meeting with the then Minister Harris, but the much anticipated meeting fell flat, with nothing promised and nothing gained, just a meeting with the explanation that these things are “complicated.”
“After reading testimonials from children in America being helped I could no longer listen to doctors or politicians telling me it wasn’t an option,” she explained.
During a second meeting with Health Minister Harris with Michael Martin, the leader of the Fianna Fail party, Martin said the state could act as insurer, taking responsibility away from the doctors and hospital, while singularly allowing her access to medicinal cannabis. This was possible, he said, because he had allowed it under his tenure as past Health Minister. But again, the meeting went nowhere, with nothing accomplished and no follow-up.
CBD with THC to the Rescue
After purchasing Charlotte’s Web at the Hemp Shop in Dublin, Ava began using the oil with two percent THC in October of 2016.
“The results were instantaneous,” Twomey shared. “There was an abrupt reduction in the number of seizures. Paul and I would look at each other in disbelief during those first days. Was this real? You learn not to hope too much when every previous drug has ended in failure.”
Hesitant to post on social media right away, the couple waited until Ava was seizure-free for a substantial amount of time.
“For 13 days Ava’s been seizure free!” Twomey explained in a Facebook post. “No tonic-clonic, no absences, drop seizures or myoclonic jerks, with no change to Ava’s routine or medications. She appears brighter and even more engaged than previously.”
It’s important to note, that between the months of October through December Ava had a total of 12 seizures while taking Charlotte’s Web. Prior to taking the oil, Ava would typically have this many seizures in a two hour period.
Aside from the significant reduction in seizures, there were side effects from the CBD—but nothing like from the pharmaceuticals—the side effects from CBD, she said, were positive.
“Ava had an increased appetite—which was needed, because she had to put on weight,” Twomey said. “It was getting easier for her to fall asleep at night and exhibited less pain when standing. She was still non-verbal, but her language began to develop and her teachers said she was engaging more with her peers. It was a revelation—life changing. We were able to see a whole new side to our child.”
The Importance of THC
It’s an unspoken rule that some THC is needed for a high CBD oil to have effects on seizures. Cultivars hybridized to have a high CBD content have trace amounts of THC, and often parents must increase the amount of THC with the CBD dosing for increased efficacy to combat the seizures.
Too much THC can actually trigger a seizure, but used in combination with a high CBD cultivar, it’s highly effective. In countries where THC is not legal, this adds another layer to the fight to help children with life threatening seizures.
The CBD/THC ratio medications they needed is called Bedrolite and Bedica, made in The Hague by Transvaal pharmacy, and measures in at just two percent THC.
Twomey got back up on her soapbox, begging for at least delivery of the medicines her daughter so desperately needed; then begging for the large sum of money to be paid upfront, rather than out-of-pocket.
In November of 2016, Twomey decided to shed light on her daughter’s plight and began walking to the Dail (the lower house of the parliament of the Irish Republic) in Dublin, to force Health Minister Harris into another meeting. Harris urged her to stop walking, again promising her help. But, again, his promises of help meant nothing.
Mom Goes Rogue in Spain
By February of 2017, Twomey realized they needed to obtain more oil with the additional THC in the mix, and she decided to make a point and travel to Spain to access it.
Spain has been legal for cannabis as medicine since 1999, with researchers making advanced findings on the plant as medicine for decades.
Twomey naively believed that if she was able to get a prescription filled and purchase the oil legally in Spain, that she would be allowed back into Ireland with it.
“We visited the Kalapa Clinic in Barcelona for a prescription where the oil was available,” she explained. “But when we presented at the airport, they had lined up all the passengers like we were criminals, with dogs sniffing everyone—but they didn’t detect the oil.”
Customs seized the medications, but Twomey said the agents looked as though they didn’t want to do it.
“I was a criminal that day, but I knew I wasn’t doing anything wrong,” Twomey concluded. “The attitudes and the law need to catch up in this country to help people like us. The good news was, for every person who got in our way, there were a hundred more supporting us.”
Walking the Talk
After the trip to Spain failed, Twomey was more adamant than ever to be able to access the medicine in her own county and continued to reach out to legislators. But, all her efforts to communicate with officials failed and she was once again ignored.
“I remembered my father’s words, ‘if the mountain would not come to Mohammed, Mohammed would have to go to the mountain,’’ she shared. “I also realized if my father were still alive, he’d have fought alongside me to save his granddaughter’s life.”
Determined to shed light on Ava’s story and force Harris into helping, Twomey decided to complete the walk to Dublin.
“I believed Minister Harris when I met him in June, so what I deemed to be the subsequent inaction over the four months prior was inexcusable,” she added. “For me it was simple, the minister needed to get the legislation already drawn up moving forward. My husband and I would both walk over hot coals for Ava, and now was the time to prove it.”
When Ava’s condition worsened in the weeks that followed, Twomey set out walking to Dublin again where she left off from the 17-mile mark, carrying little else but her coat, phone, a bottle of water and a couple of pears.
“The outpouring of support from every creed and nationalities along the way was truly astonishing,” she said. “I was joined by thousands of people from all walks of life—Catholics, Muslims, Jews—all praying in their own way for Ava.”
Hundreds of people turned out for this second walk, with thousands lining the streets of Dublin, stretching nearly two miles from the gates of Leinster House to Trinity Corner. Strangers along the way gave food and gifts. Other invited her in for meals and to soak her blistered feet in Epsom salt, as she was forced to use crutches, then a wheelchair during the final stretch when her knees gave out.
The number of sympathetic citizens was in drastic comparison to the few politicians playing politics with the plant, insisting on upholding laws that kept Ava from the help she and other children in Ireland so desperately needed.
The level of support from the people of Ireland on the walk to Dublin forced Minister Harris to meet with Twomey once again. A long meeting into the night ensued—again, with no progress made and no help for Ava.
Exiles for a Plant
Twomey and Paul realized that there was no alternative than to leave the country for the Netherlands where they could access the CBD oil with the much needed THC. Reluctant, but having no other options, they would need to crowdsource to fund the six months they’d have to spend away from home.
“With no access to a low THC medicine my husband and I had no choice but to reach out to strangers for financial help,” she said. “The help we received was humbling—something I feel deeply appreciative of to this day.”
In June of 2017 The family packed up their belongings, forced to leave their home country of Ireland to save Ava.
The General practitioner who met with them in the Netherlands was thoughtful and understanding, causing Twomey to shed happy tears for the first time in a long time.
“It was so nice to deal with progressive and positive people, who understood why the CBD and THC were both necessary to help Ava,” she said. “Ireland’s officialdom was regressive and stuck in an out-dated grudging mindset.”
The medication, Bedrolite, was acquired from Transvaal pharmacy. It contained two percent THC and 10 percent CBD, causing Ava to become a remarkable 95 percent seizure-free.
In addition to the Bedrolite, Ava’s diet and supplements were addressed—something they were never asked about in Ireland. A number of supplements were added, including Krill oil (fatty acid), vitamin D3, Zinc, coriander and chlorella.
“You could see she was less constricted and not in pain,” Twomey shared. “Before we went to The Hague, Ava would never respond to her name—now she would turn and seemed to have more understanding. She was more engaged, active, her appetite improved, and she was constantly wanting to run around the garden.”
The improvements were not lost on the neurologist in the Netherlands, finally feeling like he could grant a licence for her to access the medications. Back in Ireland, the Department of Health and Health Service Executive (HSE) could no longer deny that medicinal cannabis was working.
With Ava improving dramatically daily, Twomey and Paul would need to travel every 12 weeks to the Netherlands to get enough supply of Bedrolite, at 9,500 euros a pop. Forcing Twomey to fight for the right of having it delivered to Cork County, Ireland and their home in Aghabullogue.
Signed, Sealed, Delivered—At a Cost
“It takes five weeks to obtain a refund of medication costs,” Twomey said. “At this point, we are requesting funding upfront to relieve the crippling financial burden.”
Grateful to have the medication, grateful to have it delivered to Ireland from the Netherlands, but still needful of the medicine to be paid for up front, like any other medication in Ireland, Twomey fights on.
Important to note, Ireland’s healthcare system is considered to be a comprehensive system, with a public health service funded entirely by the government.
“I’m still begging,” she said, only partly amused. “But now, it’s not just for my family or Ava, there are other children and families suffering right here in Ireland, and this medication needs to be available for everyone at no cost—just like any other medicine. Healthcare isn’t a privilege, it’s our right.”
Purchase Vera Twomey’s e-book, For Ava: An incurable illness, A reluctant activist, An ongoing campaign, here.