In most homes with young children you will find evidence of their little lives everywhere. Yvonne Cahalane’s house in Dunmanway county Cork is no exception.
Tiny clothes are drying near a radiator, a shiny yellow plastic car lies abandoned on the couch and the Minions DVD is playing in the background.
But between the scattered toys in Yvonne's home there are other items. A large hold-alls containing piles of boxes of prescription medications, complicated-looking first aid kits and an oxygen tank.
For Yvonne, her husband John and their two sons; Oscar who is three, and Tristan who turns two in December, this medical paraphernalia are a part of their everyday life.
Tristan was diagnosed with Dravet syndrome about a year ago. Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a rare and aggressive form of intractable or, uncontrollable, epilepsy. It is genetic and therefore inoperable.
There are many physical and mental conditions associated with this neurological disorder, but most deadly are the seizures. There are many but Yvonne particularly fears atonic seizures, where the sufferer collapses in a split second, and tonic-clonic seizures, violent, full body convulsions.
Sadly, Tristan experiences one form or another of seizure every day.
For those afflicted with Dravet Syndrome, the prognosis is grim. At worst there is a risk of sudden unexplained death in epilepsy (SUDEP).
At best they face a life-time of heavy medication and supervision. This is not only physically challenging but it is mentally and emotionally draining, and equally so for their loved ones.
The treatment for Dravet syndrome is highly individual. What works for one patient won’t necessarily work for another and Tristan has already had his share of counter-productive prescriptions.
For example the benzodiazepines which are administered to bring Tristan out of a seizure are not only a highly addictive sedative but because they work to relax the muscles, paramedics have been forced to use a bag mask valve when Tristan has stopped breathing.
There are also other side effects from everything that Tristan is forced to take. Some cause behavioural problems or alter his mood, others affect his sleep and appetite. They all cause cognitive issues.
“Knowing the inevitable with the condition, we wanted to know what’s going to happen when he comes to the end of the road with the medications that’s he’s on," reveals Yvonne.
"We found out that they just rotate. They just start another cocktail of them, or a different dose, a different combination. And we just thought, the side effects of these are bad enough, besides just going over and over again with things that don’t work.”
It was this information that inspired Yvonne and John to research alternative options and through that process they have come to a decision that they hope will eventually change everything for the better.
In the past year more than €50.000 has been fund-raised by their family, friends and community. Because of this wide-spread generosity, Yvonne and Tristan are leaving Ireland on the 13th of December and moving to Colorado where they will live for the next year to eighteen months.
Once there, Tristan will begin a hospital-based therapeutic treatment using cannabis oil as a supplement.
On November 7th 2000, an amendment to the Colorado State Constitution was approved which would permit the use of cannabis to patients with specific conditions; epilepsy is included in this list.
While Yvonne is not yet releasing speficic information about the hospital or doctors that will be treating Tristan she explains that the plan is to bring Tristan to his therapeutic dose with the cannabis oil then start to wean down very slowly off the other medications.
"It could be all be brought down to a 100ml bottle of whole plant cannabis oil that could last two, even three months, plus maybe one or two pharmaceutical medications.”
While the plant is still illegal in most parts of the world for recreational purposes, laws around cannabis being used as a form of medicine seem to be changing rapidly.
“It was always a medicine, before greed and discrimination took over. It was taken off the botanical pharmacopoeia list in the 1940’s but now it’s back on there,” points out Yvonne.
There are many conditions, such as Cancer, Multiple Sclerosis, Parkinson’s disease and Glaucoma that are reportedly eased by smoking, ingesting and even topically applying different parts of the cannabis plant. Most medicinal strains are low in tetrahydrocannabinol, or THC, the psychoactive compound of marijuana and high in cannabidiol; CBD, which has medicinal properties but no psychoactivity.
Yvonne is certainly not alone in her decision to relocate to the States seeking cannabis treatment for her child. There is an ever growing community of parents with epileptic children who have moved there with the same hopes.
The widely publicised success stories behind CBD based products such as Jayden’s Juice or Palmetta Harmony will, no doubt have inspired many to make the trip.
Yvonne is thankful for all the support and love shown to her family and is optimistic about the opportunities that await her son, despite the distraught she feels about leaving her husband and her other little boy, Oscar.
Tristan’s progress will be monitored throughout the year and relayed back to Irish doctors, politicians and media.
If the treatment is successful, Yvonne wants to ensure it can be continued when they return home.
“Hopefully trials in Ireland will start soon, if people speak up, for their own child, their own condition, whatever it may be. And look into it. It’s safe. I wouldn’t try it on my child if it was a gamble or a risk. It’s something I really hope will work long term. But it will work.”