Kilmarnock mum’s fight to get her ‘miracle’ son medical cannabis
Yvonne Chafey wants her son Logan to go on a trial to help with his rare condition.
Logan Chafey is one of a kind.
The three-year-old Kilmarnock toddler is the only person in Europe with chromosome 7p duplication.
The genetic condition is so rare and unknown to scientists that there is no official name for it yet.
The side-effects of the chromosome abnormality include epilepsy and autism; the latter of which means that little Logan can suffer multiple seizures every day.
Now his mum, Yvonne, says that his current medication is having a debilitating effect on her son – leaving him feeling sick and irritable.
The 40-year-old has pleaded with medical chiefs to let Logan trial medical cannabis. But Yvonne has claimed NHS Ayrshire and Arran bosses said that Logan doesn’t meet the criteria.
She believes that CBD oil could potentially rid her son of his ailments and give him a better quality of life.
But so far, the Caprington mum’s prayers have gone unanswered.
“I think it’s terrible we’re being denied this opportunity, I really do,” Yvonne told the Kilmarnock Standard. “It’s so frustrating.
“I’ve been researching this for about a year and a lot of people have stated that the cannabis oil seems to help massively. Not just for epilepsy but for autism as well. That alone speaks for itself.”
Yvonne, who works as a golf starter at Caprington Golf Course, has admitted that she’s lucky her son is here today after a tough introduction to the world in June 2015.
“I’ve had problems with Logan since I was pregnant with him,”Yvonne added.
“He wasn’t supposed to survive. He was on ventilators when he was born. I had premature ruptures of the membrane at 19 weeks so Logan shouldn’t be here really.
He’s a wee bit of a miracle. He was born up at the Southern General and I just kept raising concerns about him since we brought him home.
“He was too quiet. Babies should cry and he didn’t cry a lot. We went from there and had genetic testing and it came back that he had a rare genetic condition and then we got the autism diagnosis and then we got the diagnosis for epilepsy.”
For Yvonne and husband Scott, 45, this was not the first time they had encountered issues with genetic conditions.
As well as Logan, the pair have one daughter, Jenna, 12, and Yvonne gave birth to twins Scott and Mya eight years ago. But a genetic disorder meant that Mya tragically passed away three hours after being born.
Logan’s epilepsy medication keeps him awake and we have to give him melatonin. That has to be up in order for him to be able to sleep,” Yvonne said.
“He’s had a spinal injury because they increased the epilepsy medication and he was running into walls and doors.
“Logan has been in the hospital with a head injury.
He’s burst his nose, he’s burst his mouth and his head.
“We’ve had paramedics in the house and they weren’t able to move Logan for half an hour because he was still in seizure.
“It’s absolutely horrendous to see him go through this when there is something out there that could possibly help him and could potentially eradicate his seizures and we’re not allowed it.”
And Yvonne said it would mean the world to her to get a medical cannabis trial.
She said: “We don’t know where we’re going with this but it’s difficult.
“You just get on with it. There’s no point dwelling on it but I’m really just trying to turn a negative into a positive and do the best I can for him really.
“It would mean the world to us.
“I’d actually be relieved if they let him go on the trial and hope that he wouldn’t have side-effects the way his medication is with him now.”
Roisin Kavanagh, NHS Ayrshire and Arran interim director of pharmacy said: “NHS Ayrshire and Arran cannot comment on the treatment of individual patients.
“To support safe and effective prescribing of cannabis-based medicinal products guidance for clinicians is being produced nationally.
“As advised by the Scottish Government, NHS Ayrshire and Arran will consider the use of cannabis-based medicinal products where there is clear published evidence of benefit; or where there is a clinical need that cannot be met by a licensed medicine and all other established treatment options have been exhausted.
“Trials of medicines are coordinated by the National Institute of Health Research and they are currently seeking proposals to evaluate the safety and clinical effectiveness of cannabis-based medicinal products.”
Logan’s fight taken to Prime Minister
Earlier this month, Logan’s plight was brought before Prime Minister Theresa May by Kilmarnock and Loudoun MP Alan Brown when he pressed on the issue of medicinal cannabis at Prime Minister’s questions.
The PM said: “Obviously the honourable gentleman has raised a distressing case about his constituent. We have taken the steps to ensure that medicinal cannabis is available.
“The decision on that availability is one that is taken by clinicians and I think that is absolutely right that that’s what should be done.”
Mr Brown said: “At the moment the current rules and regulations are just far too restrictive.
“It seems to be a way of the UK Government appearing they are amenable to patients getting access to medical cannabis products, but in reality they are not.
“As Logan is a unique case, in Europe under the current rules he will never get access to medical cannabis as there is no ‘proven benefit’ it works for someone with his diagnosis.
“This shows the absurdness of the process – this is why I raised the matter at Prime Minister’s questions recently.
“I also believe the biggest blocker is the Prime Minister herself, as she has a very old-fashioned world view in these matters.
“In her response she said it was up to clinicians to decide but the current rules put the decisions in the hands of very few people.
“I have submitted a number of written parliamentary questions on the subject and will be writing directly to the PM as a follow up to her misleading response.”