My beautiful boy Cayman is a happy, loving 13 year old boy from Macclesfield. Cayman has suffered with severe drug resistant epilepsy all his life and can have anything up to 850 life threatening seizures a day.
Despite trying all epilepsy drugs, he is resistant to them all, even rescue medication which has left him spending majority of 2018 until September 2020 in hospital including numerous intensive care stays and being put on life support 6 times in 4 weeks!
He was recently diagnosed with Lennox Gastaut Syndrome which is severe form of devastating epilepsy that no parent ever wants to hear. Cayman was offered an Advanced Care Plan (end of life plan). As a mum I cannot and will not accept this. Full plant Medicinal cannabis is something that hasn’t been tried fully on Cayman to try and control his seizures and epilepsy encephalopathy. He had a brief trial for about a month and during that time he went over 2 weeks seizure free before Manchester Children’s Hospital refused for it to be given whilst he was in their care. From the 1st November 2018 medicinal cannabis became legalised but to date no NHS prescriptions have been given.
We currently have a private UK prescription but unfortunately the cost of the medication is around £1000 a month and this cost will increase as his dose increases. We are desperately trying to raise funds for Just4Children month by month to keep paying for his medicinal cannabis. This is Cayman’s only hope to keep him alive.
As Cayman’s mum, I deserve the right to be able to hope and fight for my child. But most importantly, my little boy deserves a right to live.
Please donate what you can or maybe organise your own fundraising event. Anything no matter how big or small will be hugely appreciated.
Thank you so much.
A very desperate mum
Cayman’s Facebook page