Ireland: Mother Raising Money To Get Ill Son To The U.S. For Medical Marijuana

[Jacob Redmond]

A mum is desperately trying to raise funds to bring her toddler son to the US to be given medical marijuana as he suffers from up to 20 seizures a day.

Yvonne Cahalane said the pioneering treatment may be 21-month-old Tristan's best chance at life since he was diagnosed with rare Dravet Syndrome a year ago.

She added the severe form of epilepsy means her son must be monitored constantly and that everything in their house is padded.

Yvonne, from Dunmanway in Cork , told the Irish Mirror: "It's horrible to watch him have seizures.

"In the moment you just get on with it or they could be fatal. They usually last around 15 minutes but if it goes on any longer then we do get scared.

"We just keep telling him to breathe and hope and pray he'll be OK. His worst one was in May when he ended up in hospital for a month.

"Even with all the medication he was having fits that lasted for up to an hour.

"His speech stopped. That's coming back slowly. We are hoping speech and language and occupational therapy will help. He is also still unsteady on his feet."

Yvonne said medications haven't been effective and many can have potential side effects such as glaucoma, behavioural issues and hearing problems.

Speaking on the Neil Prendeville Show on Cork's RedFM, she added they face a race against time to help Tristan.

She said: "Between the ages of two and four are vital because of development.

"The more seizures he has, the next is usually longer or stronger, so there's more risk of brain damage or a fatal seizure.

"During the developing years teething even affects it, or temperatures, or colds."

After much research Yvonne and her husband John came across cannabis oil CBD & THCA, which has been a wonder drug for others suffering from severe epilepsy.

It is not legal here and only partially so in the UK so the mum would have to travel to the US for it with Tristan while John stays in Ireland with their three-year-old son Oscar to try to give him stability.

But Yvonne added the medicine would be worth it, saying: "There is a huge difference. We are speaking with neurologists and parents in America specifically who have children who are walking again, talking again and have stopped having seizures or instead of having 20 a day are having one a month."

The oil would be administered by a neurologist and Yvonne would have to stay in Colorado for up to a year until Tristan's condition had stabilised, although he would need to have his dosage monitored as he grows.

Yvonne accepts she will have critics, saying: "I think there are misconceptions and we are prepared for people to say, 'Is she giving her baby weed?'

"But we've seen evidence that it works. You're looking at a ticking time bomb and you know this solution is available."

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Full Article: Mum launches fundraising bid to get epileptic son to US for medical marijuana treatment - Irish Mirror Online
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[indochronic]

Just an extra bit of info on that story, probley just a different news papper. But fair play to her

An Irish mother has launched an appeal to help her fund specialist medical marijuana treatment in the US for her baby who has a potentially life-threatening condition.

Yvonne Cahalane with her son Tristan and older brother Oscar. Tristan has a rare from of epilepsy and hopes to travel to the US for special treatment involving medical marijuana. Picture: Denis Scannell

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.”
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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 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 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.