Mum's desperate appeal for cannabis oil funding as son's seizures return

[Joolz]

A campaigning Lanarkshire mum says she almost "crumbled" as her son was admitted to hospital for the first time in five years to monitor his seizures.

 

Cole Thomson spent four days in Glasgow's Sick Children's Hospital after a recurrence in his daily epileptic seizures which in 2019 left him in a wheelchair unable to walk or talk.

Cole lost a lot of his childhood and was confined to a wheelchair after suffering up to 20 paralysing seizures a day.

 

And last week, just like when he underwent brain surgery as a tot, wires were glued to the 11-year-old Canberra Primary pupil's head to monitor his brain signals 24 hours a day through video telemetry.

 

Lisa Quarrell told Lanarkshire Live it was an "emotional" experience that brought back harrowing memories of Cole's rapidly deteriorating health before he began taking 'lifesaving' medicinal cannabis which has kept him seizure-free ever since.

 

Lisa, 43, said: "It was the first time we were back for a stay in hospital in five years. The last time we were in that ward Cole was in his wheelchair.

 

"I was a bit emotional. You don't quite remember how tough it is and are trying to stay calm because Cole is stressing, but just want to crumble yourself because you're thinking 'how am I back here'. We've had five years of such a good run and then we're back in this same ward with the uncertainty of not knowing if it's going to get worse again.

 

"It was a long and stressful week but I'm glad we got home and I got to wake up with both my boys as the thought of wakening up on my birthday in the hospital was just heartbreaking."

 

Lisa is now awaiting news of potential increase in dosage which will effectively mean a hike in the price of Cole's private cannabis oil prescription.

 

The East Kilbride mum-of-two is under huge financial strain each month as she has to source £1500 to treat her youngest son's rare form of epilepsy.

 

Lisa has now been fighting for six years for government support for Cole's medicine to be NHS-prescribed, but is no further forward.

 

She added: "I thought Cole was taking six seizures a day but it turns out he's been taking 11, they've just not been as noticeable as his head is only slightly moving through his sleep.

 

"So we now need to look at what I want to do going forward. But the problem I've got is the NHS don't work with the private team which is ridiculous. I had a meeting with the Chief Medical Officer and Chief Pharmaceutical Officer to say how ridiculous it is that I'm having to go between them - it's neglect.

 

"I want this nipped in the bud because the last time the seizures started in May and it took us till September to get anything sorted and by that time Cole started losing his ability to walk and talk so I'm not leaving it, it needs to be quickly sorted."

 

Lisa believes, as Cole is getting older, he just needs his cannabis tweaked but says she feels like she's "fighting against my own gut because the NHS just don't approve".

 

"You'd think five years down the line with how much success we've had, the conversations would be less uncomfortable, but you just know that they're looking at you like 'here we go again' instead of saying do you know what, it's helped him, he's had no side effects from it, he's doing amazing, let's see if we can help him", said Lisa.

 

"The type of epilepsy Cole has is not curable and not something he can grow out of. He has damaged tissue in his brain and that's just what we need to live with. But having long periods of time that he's seizure-free is thanks to the cannabis and that should be available to us. We've done our trials and we've done our time. It should now just be readily available for Cole.

 

"It's just so frustrating and now I'm faced with an increase in the cost of his medicine. I don't know how much until we know what we're tweaking but I imagine it will go up by around £500 per month so I'll be closer to £2000 a month which is an additional £6000 a year which is just crazy."

 

The Scottish Government has said that while they have “enormous sympathy” for Cole Thomson and his family, the regulation, licensing and supply of Cannabis Based Products for Medicinal Use (CBPMs) remain reserved to the UK Government and it has “no power” to alter this.

 

Equi's Ice Cream is supporting a local campaign to fund Cole's lifesaving cannabis oil is urging the Lanarkshire business community to dig deep.

 

'Cole's Christmas Wish' appeal is just 11 donors away from achieving its goal of securing a year's supply of 'miracle' medical cannabis for Cole.

 

As reported by Lanarkshire Live, the annual fundraising drive is asking for 36 businesses to each pledge £500 to cover the annual cost of the brave boy's 'miracle' cannabis oil treatment.

 

David Equi, managing director at Equis Ice Cream, visited Cole in hospital and brought ice cream for all the nurses on his ward.

 

He said: "Visiting Cole in hospital really brought home to me how different things could be without Cole's private prescription for his medicinal cannabis medication.

 

"Young Cole is currently suffering side effects from the other free NHS prescriptions he's been taking. As a result he will most likely need to increase the amount of Bedrolite to give him the best chance at being seizure-free again.

 

"The knock-on effect of this will mean more money being needed every month to keep him functioning to his best ability and out of hospital.

 

"I urge anyone who wants to get involved by donating to our Campaign for Cole to get in touch. We are just over halfway with businesses so far and hope we can get more businesses involved.

"March 26 is Epilepsy Awareness Day and it would be a great way for us to celebrate by getting Cole secure for another year."

 

To make a pledge call Lisa on 07825 252 523 or email lisaquarrell26@hotmail.co.uk

 

 

https://www.dailyrecord.co.uk/in-your-area/lanarkshire/campaigning-lanarkshire-mums-desperate-appeal-32361553

[Military Grade]

It's disgusting she has to pay for it, Let alone for them kinda prices, Or feel like a criminal for being self efficient

[Revive]

Such a sad story this..I can't believe she is unable to get the help she needs through the NHS and is forced to pay the crippling prices for private meds and care.

The laws surrounding medical cannabis are just diabolical and hearing of folk suffering in this way just makes me feel sick to my stomach.

 

[KC]

It is really wank but surely she must have considered growing it herself? I hear it ain't that difficult.

 

£1500 quid a month, ffs who can afford that!