Mum’s drug appeal for son who has up to 300 fits a day
AMUM whose severely epileptic son suffers up to 300 potentially life-threatening seizures a day is fighting to get him treated with cannabis
Cayman Norton, 12, from Macclesfield, had been diagnosed with Lennox Gastaut Syndrome -a severe form of the condition which is drug resistant.
A specialist diet and 15 different anticonvulsants have had no long-term effect and the situation is so serious mum Angela has been told to prepare an end of life plan in the event of the worst.
She says bedrolite - a full plant medicinal cannabis product - has helped other children in the same situation and could also transform Cayman’s life.
Although it is now legal there is a widespread reluctance among health bosses to prescribe it until more trials and evidence of its effects are established.
While battling to change this Angela has also found a private prescription for it but at a cost of £1,000£1,500 a month, which will increase as higher doses become necessary.
So she has set up a JustGiving page, which so far has raised more than £6,000 of the £30,000 target.
Angela, 47, of Hamble Way, said: “I agree there should be trials but children like Cayman can’t wait, they have no other options left and are confined to hospital.
“Children with complex epilepsy are thriving, going back to school and staying out of hospital (by using cannabis medication).
“Any seizure could kill him, as a mum you dread waking up in the morning to see what you might find.
“All you can do is comfort him and keep fighting.
“This could save his life potentially and transform it.”
Cayman has suffered from epilepsy all his life but now it is in a severe state he cannot walk, talk or feed himself. He has spent nine of the last 12 months in Manchester Royal Children’s Hospital - including five weeks in intensive care.
Angela also lives with her two other sons - Harry, 17, who is epilepsy free and Reims, 19, who is as badly affected as Cayman.
He is under adult care and Angela has yet to find a doctor who will prescribe him bedrolite so for now is concentrating her efforts fundraising for Cayman.
Angela said: “It is heartbreaking to see them suffer. It could be life-changing for all of us, they have the right try it.”
A Department of Health and Social Care spokesman said: “There is a clear consensus on the need for more clinical evidence.
“The decision to prescribe must remain a clinical one, made with patients and their families, taking into account the best available international evidence, potential risks and benefits and individual circumstances.
“In addition to the actions set out in our response to the Health and Social Care Committee report published this month, we are also carefully considering NHS’s recent findings to identify how we can better support clinicians in prescribing cannabis-based medicinal products.”
Health body NICE is consulting on its findings on the use of cannabis-based medicines and is expected to publish final guidelines by November this year.
Anyone wishing to help or donate can visit www. justgiving. com/ campaigns/charity/just4children/caymanslifesavingjourney or email angelanorton45@ gmail. com.