This month marks a Lanarkshire mum’s fourth year battling to access lifesaving medical cannabis for her son.
For the last decade, the East Kilbride News has followed Cole Thomson’s heartbreaking journey as his family desperately search for a cure for his paralysing epileptic seizures.
Now fighting an ongoing battle to secure an NHS prescription of cannabis oil - which leaves him seizure-free - Lisa says Cole is “living proof” of the effectiveness of the drug.
However, under huge financial strain, Lisa and her family now have to source £1500 every month to pay for a private prescription - amounting to a whopping £18,000 per year.
So, this week, Lisa is launching a new fundraising drive partnership with Equi’s Ice Cream - a drive Lanarkshire Live are happy to back.
'Cole’s Christmas Wish' appeal is asking for 36 businesses to each pledge £500 to cover the cost of Cole’s lifesaving medicine for a whole year.
With seven donors signed up so far, 29 more are needed to make the drive a success.
Mum-of-two Lisa told us : “November is Epilepsy Awareness Month, but instead of raising much needed awareness, I need to start raising money to pay for the medicine keeping Cole alive.
“We still have a few months money left, but don’t want to be close to running out like I did earlier this year. Cole’s medicine is now £1500 every month and it can increase as he gets bigger and puts on weight.
“Unfortunately there’s been no movement by NHS Scotland or The Scottish Government to start trials, put funding in place, or do the things they can actually do.
“With absolutely no support from the Scottish Government or Westminster, I’m having to get the begging bowl back out.”
Cole receives the cannabinoid Bedrolite privately as his NHS consultant is not allowed to prescribe unlicensed medical cannabis due to a lack of robust evidence of the drug’s safety, quality or efficacy.
That's despite the "clear evidence" in Cole's case.
A four-year battle for government funding has resulted in nothing, with the family having so far forked out in excess of £80,000 to keep the youngster seizure-free.
An exhausted Lisa added: “This time of year is always the hardest because it used to be our favourite time of year.
"I love Christmas, especially the build up, and Christmas Eve is magical. But now November is the month I think of fundraising for the year ahead.
“If Cole is taken off Bedrolite he could go into a coma and die - that’s the reality I live with every day.
"Every day for four years knowing without the help and support of the community around us I could lose my son.”
David Equi, who came up with the fundraising idea, works closely with Maggie’s Lanarkshire and is an ambassador for the Kilbryde Hospice.
He said: “I’ve known Lisa and Cole for a few years and was really shocked when I found out how much of a strain it was for her to raise that money to keep her boy alive.
“I thought if I could make a difference by using some of my connections I’m going to try and help Lisa.
“Times are tough at the moment, businesses don’t have a lot of money to spare, but if I can get 36 to put up £500 each for the year that’s not a huge amount and it’s way more doable than Lisa having to raise £18,000 through fundraising.
“I’ve gotten to know Cole quite well, he’s a great wee kid and without that medication - it doesn’t bear thinking about.
"So I will do anything I can to try and help. And if we can get it long term rather than a one off donation it would make Lisa’s life a lot easier.
“I really don’t know how she manages under all that pressure.
"She’s like superwoman, but she does need a wee helping hand,
“It’s a great local story, so hopefully, by raising the profile, we can encourage other people to come out and help.
"I know that the people in the west of Scotland proportionately give way more to charity than anywhere else in the UK.”
Drug laws are reserved to Westminster but Lisa argues that there is more the Scottish Government can do with the powers they do have;
such as putting a fund in place, bringing Scottish guidelines up-to-date, putting routes in place to allow consultants to feel more secure prescribing cannabis oil and making “proper unbiased” education available to them.
The Scottish government 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.
Lisa says Cole lost a lot of his childhood due to his rare focal epilepsy suffering up to 20 seizures a day for six years.
He had to repeat primary one and miss out on things most kids take for granted spending months in hospital, attending appointments, taking tests, all while dosed up on strong prescription drugs.
Lisa added: “Although Cole’s no longer taking seizures we are still fighting the years of damage they have caused and the only way to do this is by keeping him stable on the only medicine that has achieved this, Bedrolite.
“So please if you have a business and can donate £500, please be one of our 36 and help keep Cole safe and let us relax over Christmas knowing he’s safe for 2023.”
David Equi was the first to pledge his support with Equi’s Ice Cream the first £500 donor to Cole’s Christmas Wish campaign.
Six more businesses have signed up so far: ProSigns, Cole’s taekwondo club owner Master Hutton, Cole’s grandad David Quarrell of Clearway2Drive, Premier Mo's Blantyre and The Millers of Edinburgh.
Alex McGrath of ProSigns has also donated a hospitality table for four at any Hamilton Accies game to be raffled off for one of the 36 donors as a thank you and Mr Equi is offering a year's supply of his famous ice cream to one lucky donor.
To make a pledge call Lisa on 07825 252 523 or email lisaquarrell26@hotmail.co.uk
For more information visit Cole's Campaign on Facebook.
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