Yvonne Cahalane, from Dunmanway in West Cork, said she needs to raise €35,000 to fund the treatment for her 21-month-son, Tristan, who has a very rare form of epilepsy which triggers severe seizures.
“We missed out on a place on a medical trial in Carolina because he was too young,” Yvonne said.
“But a neurologist in a hospital in Colorado has agreed to take him on. We would like to be there early in the new year, and we are starting him on a new medication soon to stabilise him for travel. We hope that one year in the States will be enough.”
Tristan was diagnosed late last year with Dravet Syndrome — a rare and severe form of epilepsy. He suffers up to 20 seizures a day, with some of the more severe seizures lasting up to an hour.
“It’s very difficult to watch — it’s like a ticking time bomb,” Yvonne said. “It’s fine when the seizures are happening because the adrenalin kicks in and you just do what you need to do to help him. It’s tough though when they’re finished.
“The nighttime seizures are the worst part. Some are quite violent. And it’s the really long seizures — that’s when you worry about the possible long-term damage to him,” she said.
The little boy, who has been nicknamed Mr T because of his brave outlook, has had to learn to walk and talk again as a result of his seizures.
“He is so resilient. Even when he wakes up after a 20-minute seizure, he will sit up, wobbly and disorientated, but he’ll still have this big smile and say ‘hi’.
“These are the little things we fear we’ll lose if we get a really big seizure. We’re very lucky he recovered so well and is receiving physio and speech and language therapy to help. But some days are better some worse. It’s intractable and medications don’t control his seizures for very long. We have gone through most meds at this stage. This won’t get better without help.”
Yvonne appealed on the Neil Prendeville Show on RedFM yesterday for help fundraising to cover their medical costs and living expenses. The medication Tristan needs to keep his seizures under control — CBD oil and THCA, both derived from the marijuana plant — is available in the US.
The oil would be administered orally in drop form as part of a technical and slow process overseen by a neurologist. It would then be absorbed into the receptors in Tristan’s brain in the hope it would control his seizures. The medication could take up to three weeks to kick in.
Yvonne’s husband, John, and their oldest son, Oscar, three, plan to stay in Ireland while Yvonne and Tristan travel to the US.
She called on the Government last night to introduce legislation “sooner rather than later” to allow for the wider prescribing of medicinal cannabis here.
Medical marijuana treatment, similar to that lined up for Tristan, has been trialled successfully in London’s Great Ormond Street, in the Netherlands and France.
You can donate online at www.gofundme.com/tristans-med-fund.