IN his brief four years on earth, Tristan Forde has achieved an incredible amount.
The courageous child was born with a severe form of epilepsy that saw him suffer up to 20 seizures a day — some attacks lasting up to an hour.
Then he spent a year being treated in the US, and just over a year ago he created medical history when his family won the right for Tristan to become the first person in Ireland to be legally allowed to use cannabis for medical purposes.
Thirteen months on from that historic decision by Health Minister Simon Harris, and Tristan is a changed child.
His epileptic attacks have been severely reduced, he is about to start school this year, and his mother, Yvonne Cahalane, is studying law.
Crucially, this loveable boy is enjoying a normal childhood for the first time.
“He constantly surprises his big brother, Oscar,” says Yvonne. “He is a real joker. Tristan says ‘Boo!’ to Oscar when he’s not expecting it.”
The brothers are allies.
“Oh yes,” say Yvonne. “They are in cahoots together. There is a year between them; the boys get along really well together.”
Dad, John, often gets an unexpected wake-up call in the morning.
“Tristan comes in giggling, waking John up with a tap of a shoe on his head!”
Thanks to his ground-breaking treatment, Tristan can now live the life of a care-free little boy: playing with his brother, trotting his pony at Bantry Bay Pony Trekking, and spending precious time with his beloved grandad.
“When his ‘Gaga’ arrives, Tristan will seek him out,” says Yvonne. The two have great fun together. He plays tricks on his grandad. ‘Gaga’ doesn’t mind.
“Tristan is a real fun-loving chap. Before, the sheer joy of seeing his grandad and nana coming was enough to bring on a seizure.”
Tristan’s life and the lives of his family have been totally transformed. He now goes months between seizures, which generally only last for 40 seconds.
Yvonne travelled 4,000 miles from her home in Dunmanway to Aurora, Colorado, in December, 2015, for the bones of a year, to avail of medical cannabis to manage Tristan’s seizures.
He was diagnosed before he was one year old with a rare form of epilepsy, Dravet’s Syndrome, which left him suffering regular, prolonged and severe seizures.
“We knew that it was our only option,” says Yvonne. “We knew the treatment would be effective, but we never realised how incredible the results would be.
“Health-wise, Tristan went through endless hospital trips, needing antibiotic after antibiotic, nine medications, oxygen and inhalers. He couldn’t play for longer than ten minutes with his brother. It was too much for him. Tristan was at the severe end of the scale.”
Things are different now.
“Tristan’s quality of life has totally improved,” says Yvonne.
His days are filled with activity and joy.
“From 9am to 12pm it is school-time where we read, do colouring and numbers. The kitchen resembles a crèche where we have an old school desk,” says Yvonne.
“Drimoleague National School donated a blackboard. It is the length of the hall. Tristan stands at the blackboard, drawing on it. It is a way of strengthening his core.
“He also attends The Family Resource Centre and loves the interaction.”
When Oscar comes home from school, he reads to his brother.
“Oscar sings him rhymes and songs that he learnt in school. Tristan loves imitating him and before we know it, he is singing the songs too. Tristan learns from Oscar.”
The days when life revolved around worrying episodes, endless hospital trips, and therapies, have lessened considerably.
“Tristan would go blue, gasp for oxygen and often vomit during a seizure,” recalls Yvonne.
“Imagine watching your child go through that for an entire episode of Coronation Street, or even for the length of a football match. It is an eternity. And waiting to see how they wake up afterwards is an eternity.”
His brother, ‘Dr’ Oscar knew what to do.
“Oscar had the child-like attitude of having no fear,” says Yvonne. “It was never a big deal. He got involved and took the approach: this happens, don’t be scared. This is what we do. It’s fine. Oscar would get a towel and rub Tristan’s head or get an ice-pack from the freezer to bring down his temperature.”
The family do everything they can to protect their little boy.
“We are still in touch with the paramedics and keep oxygen and suction equipment in the house, just in case.”
Tristan is thriving.
“He is down to just two medications, on a reduced dosage, along with his medical cannabis,” says Yvonne. “He was on nine medications at one year old. He had tried a total of 14. They had many effects on him. I felt that I should apologise to Tristan. It was a case of, you’re damned if you do and you’re damned if you don’t.
“The two medications he’s on are self-weaning; as he grows older, he will be less reliant on them,” says Yvonne. “The other seven medications are gone.
“There are over 40 types of seizures. Of the many Tristan used to have, he only experiences two types very infrequently now. So a number of seizures have ceased entirely.
“Tristan hasn’t had to go to hospital since we began the new treatment in Colorado more than two years ago.
Yvonne and John hoped for some improvement, but the treatment, which Tristan takes orally daily, proved a massive success, giving the little boy a chance at the life he deserves.
“At best, we hoped for a 10-15% control and less seizures” says Yvonne. “The researchers and professionals thought Tristan would be somewhere in the middle.”
The brave lad exceeded all expectations.
“He was in the 80%-90% bracket. We were so excited.”
Tristan’s dad and his brother met a different little boy when they travelled to Colorado in April, 2016.
“John saw a huge difference in Tristan” says Yvonne. “He could only stay for three days because of work. Oscar stayed on with me and Tristan. I couldn’t bear to be without him any longer. Oscar was so sad when I left home. He couldn’t understand it.”
Tristan loved the company.
“He had Oscar for company and social inter-action. He looked up to his brother and they played together.”
The family home is now happy, healthy, and lively. It seems a long time ago when Yvonne and Tristan said goodbye to John and Oscar to undertake the journey that would change Tristan’s life for the better.
“I lost a lot of weight before the trip,” says Yvonne, recalling the lonely journey that separated the close knit family. “I had no sleep. John and I did shifts during the night. I was awake around the clock. It was draining.”
Shortly before the planned departure to Colorado, Tristan had to be hospitalised for three weeks after he caught a cold that affected his immune system.
“He suffered numerous seizures that were difficult to control,” says Yvonne. “There was a whole team of nurses and doctors tending to him. They couldn’t stop the seizures. They just couldn’t. The doctors managed to bring down his temperature, but it was still no good. It was pretty bad.
“You feel helpless. I remember my sister came to the hospital, she had never seen the extent of the seizures before. A nurse asked us if we were religious, to call someone.”
Tristan, ever bold and brave, battled hard.
“He was very affected by the amount of medications and by the effect of the seizures,” says Yvonne. “He couldn’t walk or talk afterwards.”
Tristan had something to say though.
“The October before we left for Colorado, he said, ‘love’.” Love conquers all. Mother and son landed in a blizzard in one of the worst winters Colorado experienced in years. “I just got out the buggy and ploughed through the snow,” says Yvonne.
Tristan had been accepted into a study to ensure he would benefit from the treatment plan.
“He had all his levels measured, blood tests, his hearing and sight, to physiotherapy and occupational therapy.”
His response to the treatment was nothing short of amazing. “Within the first week there was an instant effect,” says Yvonne.
He couldn’t get the words out fast enough.
“He was babbling and making eye contact,” says Yvonne. “He pointed at things and was repeating what I was saying. His stability improved. In the second week, his cognitive improvements were really noticeable.”
Yvonne and John had always believed the oil, containing CBD (cannabidiol), and THC (tetrahydrocannabinol), would work for their son.
“Tristan’s success cemented the medical team’s confidence in the treatment,” she says.
The boy is now looking forward to joining Oscar at St. Mary’s National School, Dunmanway in September.
“He’s a very social chap,” says Yvonne. “I know there will be a host of relations and well-wishers to wave him off. It will be huge.”
Meanwhile, mum has gone back to school too, making use of her extensive research skills.
“I considered doing Legal Skills,” says Yvonne. “But I was encouraged to go further. So I did. I’m in my first year studying for my Law Degree at Griffith College, Cork. I will put it to good use in the long term, not just for Tristan but to make a difference.”
Yvonne can help others who are in a similar situation to Tristan.
“I can give advice but it’s important to take the information to a doctor or consultant responsible for caring for them. Our own experience can help others.”
Yvonne’s path to Colorado was unknown territory. “Nobody knew the route to take,” she says. “We felt we had to go abroad, as there had never been an application for medical cannabis before we did it.
“Every step was like climbing a ladder, the fundraising, the petitions. There were often dead-ends. It was never the end of the line.”
Tristan’s new lease of life has had a domino effect for the family. “The future is much brighter for all of us,” says Yvonne.
And Tristan will know all about his epic journey when he is older.
“We are adamant he will know about all the people who helped him along the way,” says Yvonne. “I have every cheque, every signature and every cutting in a big box and Tristan will see them all.”
The family won’t be apart ever again. They have found the Holy Grail of happiness. Would Yvonne do it all over again?
“Sometimes I think; did I really do all that?” she says. “We did so much research. We respected everyone’s opinion and still got it done with dignity. I’m glad about that.
“We have done more than we should have had to do, but less than we were willing to do… And yes, I would do it all over again.”
“This is an amazing treatment for intractable epilepsies but is still not a cure. There is so much research continuing in this field, I am hopeful for future treatments to be successful.
“I am looking forward to safe access to medical cannabis becoming available for a wider range of conditions in the future.”
“We take nothing for granted and enjoy every moment we have together with Tristan,” concludes Yvonne.
“Tristan would go blue, gasp for oxygen and often vomit during a seizure. Imagine watching your child go through that for an entire episode of Coronation Street, or even for the length of a football match. It is an eternity.”