medical cannabis Vera Twomey is the mother of Ava, a little girl who developed Dravet’s Syndrome at four months old. For the first seven years of her life, Ava suffered up to 400 seizures a month until 2016 when Vera turned to cannabis for help. That decision changed their lives. Today, Ava is “pharma-free.”
Ava’s Story: A Sick Child Saved by Cannabis
Nine years ago, Ava Barry was born a happy healthy baby girl, but at around four months she began to have seizures. Her terrified parents immediately brought her to their local hospital in Cork, south of Ireland, where the doctors began the process of trying to figure out what was wrong while simultaneously prescribing a mix of liquid medications to control the seizures, which could last up to 45 minutes.
When Ava was around 12 months old, she was on four different medications though none of them had any effect on the seizures, which kept coming, and were getting stronger. Around that time, a consultant sat Vera down and explained that Ava had a rare form of epilepsy called Dravet’s Syndrome that would prevent her from ever talking or walking. He said it was unlikely Ava would live beyond the age of 3.
Ava’s life quickly became a constant round of seizures, calls for the ambulance, rushes to hospital, days in hospital, more medications, back home, more seizures, calls for the ambulances, rushes to hospital, and so on, for years. By the age of seven, Ava had had two heart attacks and was taking 16 different medications a day. None of them helped. The seizures kept coming.
In October 2016, Ava spent eight days in a coma. The consultant sat Vera down again, and said the best thing she could do was take Ava home and “make her comfortable.” Vera was horrified. Unlike the doctor, she’d held Ava jerking head as she convulsed and fought for life. If Ava hadn’t given up, Vera was only getting started. She contacted Dravet Syndrome UK, and heard about the case of Charlotte Figi who’d successfully used cannabidiol/CBD Oil to treat her condition.
Vera spoke with a senior neurologist and asked him about cannabis. When the doctor said that in a similar situation, he’d give cannabis to his own child, Vera took it as sound medical advice. She started Ava on Charlotte’s Web, the same CBD Oil taken by Figi, which reduced the seizures down to nine from 400 a month – a huge difference. Since starting on CBD Oil in 2016, Ava has not returned to hospital.
But after five months, the CBD oil lost some of its effectiveness and it was clear that Ava needed the other cannabis compound, THC (tetrahydrocannabinol), to regain her full health. An 18-month battle with the Irish government ensued as Vera fought for Ava’s access to medical cannabis, and won. Today, Ava is seizure- and pharma-free, and is in possession of a license for medicinal cannabis, one of only nine in the country; Vera has become one of Ireland’s most prominent campaigners for medical cannabis.
Vera’s Story: A Strong Mother Stands up to the Government
“My daughter is my motivation,” says Vera Twomey from her home in Cork. “That little girl is such a fighter. I have seen her come back from the brink of death, and today, she’s with us, laughing, talking, going to school. Cannabis has given us a future. It’s given us the chance to lead normal lives. Every family deserves this joy. This is what I’m fighting for.”
For Vera the fight for cannabis began in November 2016, the first time she applied for a medical cannabis license. She had the support of Gino Kenny TD of the independent party, People Before Profit, but the government wasn’t listening. That’s when she made the decision to walk 260 kilometers from her home in Cork to Dail Eireann, the Irish house of government in Dublin. That got the attention of the national media, but still no response from government. So Vera put her trainers back on, and walked to Dublin again, ignoring warnings from Gino and her husband not to. With no support available to Ava in Ireland, Vera had no choice but to take her abroad.
“The government basically put the life of my daughter at risk by forcing us to travel,” says Vera. As flying was too dangerous for Ava, Vera and her husband gathered their four kids into a car, and drove to Holland though England. They funded the trip through a GoFundMe page, as Ava’s mounting medical costs – her CBD oil cost up to €5,000 per month – depleted the family bank account. “The generosity of strangers saved my daughter’s life, while the politicians did nothing,” she says.
When Vera returned to Ireland from Holland, she launched a relentless media campaign, garnering support from across the country, and this time she wasn’t taking no for an answer. Her campaign efforts won her a People of the Year Award in 2018, and she used her acceptance speech as a chance to call out Ireland’s Taoiseach (prime minister) Leo Varadkar, and demand medical cannabis for all, saying, “We need our medication.”
Vera was successful in her campaign, and Ava was awarded the license for medical cannabis in 2017. But that wasn’t enough: “For seven years, the HSE (Ireland’s Health Service Executive) had no problem funding Ava’s pharmaceutical medication,” explains Vera. “As soon as we wanted reimbursement for Ava’s medical cannabis, they didn’t want to know. It took me three months to get reimbursed for those costs, but I’m one of the lucky ones.” Unlike Vera, most patients using cannabis to treat life-threatening conditions are not covered under Ireland’s Long Term Illness Scheme.
Ireland’s Story: A Country in Need of Cannabis
“The HSE is making things as difficult as possible for patients by denying them funding for medication,” Vera explains. “It’s the final hurdle, another way to make sick and vulnerable and tired people jump through pointless bureaucratic hoops.” In May 2018, Vera spoke about her frustration with the Irish healthcare system at a press conference attended by Kenny, Mick Barry TD, and Jonathan O’Brien TD. A video of her talking viewed online 250,000 times. It was after that the Irish government reimbursed her medical costs.
Because of the media attention, Vera now receives more than 50 calls a week from other families in need of cannabis to treat a wide range of conditions, everything from chronic pain and fibromyalgia to arthritis and cancer. Vera is baffled by the government’s slow response: “They have the ability to help people by doing the right thing, and the biggest irony of all is that cannabis could eliminate the Trolley crisis in Ireland by keeping people out of hospital.”
“The other thing that no one considers is the psychological damage that’s done to a patient that can’t get access to medical care in their own country,” Vera continues, “It’s isolating. I know this firsthand because I’ve been overwhelmed with calls from all over the country, from people desperate for help. They’re calling me because no one else is listening to them. That’s how bad things are.”
What Vera wants now is a comprehensive education program for the medical community: “Doctors need the confidence to prescribe cannabis. One of the best things about being in Holland was dealing with medical professionals who understood cannabis, and more importantly how it interacted with other drugs. Once the doctors are educated, things will start to change at grassroots.”