Hi,

Firstly, thank you for taking the time to check out my JustGiving Page and I hope it finds you well.

My name is Carol and together with my Husband Andy we have the most amazing little girl called Lauryn. We also have the most amazing little boy called Ryan who is 4 but it’s Lauryn that I’m here to tell you about and to ask for your support if possible.

Lauryn is 7 years old, and our family stay in, Newmachar, Aberdeenshire, Scotland. She has a severe form of drug resistant epilepsy and since 2020 has been taking medicinal cannabis to help give her back a quality of life.

Lauryn started having seizures at just 6 months old and before her 1st birthday had already been put on a life machine after suffering from a seizure which couldn’t be stopped. Eventually after months of many seizures, 999 calls and being rushed to hospital an NHS medicine helped her, and she was seizure free for 14 months. This was the best 14 months of our lives, she was a happy, funny, well behaved, bright little girl who went to playgroup, play dates, parties and was constantly singing.

Unfortunately, Lauryn’s seizures returned in October 2018 just before her 3rd birthday and despite her medicine being maximised and new medicines being added nothing helped. In April 2019 she had 25 seizures in one night and lost the ability to walk. In June she was put on a life support machine again and by the beginning of August we had to take her into Aberdeen Hospital as she began to rapidly deteriorate. She hadn’t eaten or drank barely anything for weeks so had lost so much weight and she was like a zombie as she was so heavily medicated. She kept getting worse as the days passed, sleeping all day and night and by the middle of August she couldn’t hold her head and body up, lost the ability to talk, drink, hold objects and even crawl.

It was from here that we turned to medicinal cannabis to see if it could help her. While we were doing our research into it the NHS were starting to roll out their new unlicensed cannabis oil called Epidiolex and as Lauryn was so ill, we were able to try it. There was improvement, although very unsteady it got her back on her feet, but her seizures were still there, and she suffered with its horrible side effects of sleepiness, severe diarrhoea, and appetite suppression. Then after 3 months it stopped working and she became very poorly again.

In our research we discovered Bedrolite which is 100% whole plant cannabis oil compared to the NHS oil which is isolated cannabis oil, so it doesn’t contain all the other benefits from the plant. Bedrolite had been trialled, is legal in Holland and we had seen reports in the media of it having amazing effects on many children like Lauryn. We of course knew that it might not have helped her but as her parents needed to try everything possible and exhaust all options to try and help her.

There are 2 children receiving an NHS prescription for Bedrolite under a compassionate access scheme but despite the government changing the law back in November 2018 to state that it can be prescribed by doctors on the specialist register, Consultants were and are still unwilling to prescribe it due to their lack of knowledge on it.

Through a Paediatric Neurologist at a private clinic, we obtained a prescription for Bedrolite and from then we have never looked back. It’s without a doubt given her back a quality of life and our little girl back to us but most of all she is enjoying her life practically seizure free with a 95% seizure reduction.

However, it comes at a massive cost of £856 per month which we do fundraising to help with.

I know that things are so difficult for us all just now but if you would like to and are able to help us in any way you can be it with a donation no matter the amount, some fundraising help / ideas or by sharing my page we would be so grateful.

Lauryn also has a Facebook Page called “Little Lauryn” and even if you can’t help us, we’d be so grateful if you could give it a like and share not only for support but for much needed awareness too.

Thanks again,

Carol x

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