In December 2016, three-year-old Tristan Forde from Dunmanway became the first person in Ireland legally allowed to use cannibas for medicinal purposes. Since then, Tristan, who suffers from a catastrophic form of epilepsy, Dravet Syndrome, has been seizure-free.
Prior to this, Tristan spent a year living in Colorado in the US with his mother Yvonne Cahalane to get the medical treatment he needed. Yvonne decided to relocate in order to administer the medicinal cannabis to her son in a bid to help reduce the number and severity of his seizures. Tristan was suffering up to 20 seizures a day. After witnessing the amazing transformation that the drug had on her son, Yvonne campaigned tirelessly to have medicinal cannibas legalised in Ireland.
Their long and frightening journey over a number of years has paved the way for families in similar situations to access the treatment they need. A Government-commissioned review published in February is recommending the medicinal use of the drug for the treatment of patients with specified medical conditions.
The specified conditions are: spasticity associated with multiple sclerosis; intractable nausea and vomiting associated with chemotherapy; and severe, refractory or treatment-resistant epilepsy.
Mr Harris also said that a compassionate access scheme for cannabis-based treatment would be established. Patients accessing cannabis through the programme should be under the care of a medical consultant.
“As far as I’m aware, once you’re working with your doctor, now you just have to put your name down for the access scheme and the treatment will be made available to you if you have one of the specified conditions,” says Yvonne, who had to go through an application process before a licence was granted late last year to allow Tristan access to medicinal cannabis in Ireland. “There was no such thing as an application process before we left for the US,” explains Yvonne, “so one had to be designed especially.”
“When Tristan was diagnosed with Dravet Syndrome, it felt like we were in mourning,” says Yvonne emotionally. “His condition was very severe and we were told to expect the worst. Most children who are diagnosed with this form of epilepsy don’t make it past their teens and many don’t make it to their teens.”
Yvonne and Tristan’s dad John were living in a constant state of fear. “We were petrified,” says Yvonne, “we had cameras on him day and night and we were with him day and night. He slept a foot away from my pillow. Although he looked as peaceful as any normal sleeping baby, just the slightest noise, almost like a sigh or gasp, could indicate a 20-minute seizure.”
Yvonne says her training with the Irish Red Cross helped to keep her baby alive. “They were amazing, prepared me for essentially saving him, keeping him alive until the paramedics arrived.”
“You just get on with it,” says Yvonne, when asked how the family coped with these traumatic episodes every day.
“I’ve often compared his minimum seizure to an episode of EastEnders, imagine sitting through an entire episode. His extreme seizure would be about the length of time it takes to play a football match, including breaks in-between.
“Tristan has had a lot to deal with and although as a family we did grow to manage his condition, it was always a huge concern and isolated him and ourselves from daily routine life.”
In May 2015, Tristan suffered so many seizures that he stopped walking and talking. “The longer the seizure and the more often they happened, the higher the risk of developmental problems or brain damage,” says Yvonne.
Although after a few months, Tristan was able to take a few steps again, he started having drop attacks – sudden spontaneous falls while standing or walking. “It didn’t matter what he was doing, he could be watching TV or playing with his truck, he’d literally fall to the ground and recover after a few seconds,” explains Yvonne.
Yvonne and John bought a helmet for their son and covered their home in protective padding, shielding Tristan from radiators, sharp corners, stairs, anything that could harm him when he fell. The couple even sold their kitchen furniture to create a safe playing space for the little boy.
John was training to be an air traffic controller at the time, so Yvonne had to look after Tristan and his older brother Oscar on her own during the week. “There’s a high risk of sudden unexpected death in epilepsy so there was no peace,” she says “I’d literally try to catch a power nap while Tristan was playing safely at my feet and jump up in fright after a few minutes.”
Eventually, Yvonne took her son to the US to get the medicinal cannabis he needed to stop his seizures. After living there for a year, their application for a licence to allow Tristan access to medicinal cannabis in Ireland was approved and Yvonne and Tristan were able to come home to their family.
Tristan’s first new word on returning from the US was “happy”.
Today, the little boy can play without someone watching over him, can eat for himself, go outside with his brother, and is potty training at the moment, all normal things that his condition prevented him from doing before.
“He loves social interaction and is so happy at the thought of being able to go to school. We were even able to take a day trip down to Killarney recently, something we’ve never been able to do before,” says Yvonne.
“In every aspect of his life, he’s just free…”
Yvonne, John, Tristan and Oscar would like to sincerely thank everyone who has supported them.