Ben Griffiths is currently being treated there after his condition worsened and he began having up toÂ 300 seizures a day.
Joanne said she has the backing of her sonâs neurologist but the move was blocked by the trust after it had a panel meeting.
She cried as she told i that her child has spent years suffering head injuries and âhas no lifeâ lying in bed all day. She fears the fits are causing Benâ who suffers cerebral palsy â further brain damage.
I see the fear in his eyes when he has the seizures. It breaks my heart
It comes as campaigners say patients are being deniedÂ NHSÂ prescriptions for medicinal cannabis despite it now being legal.
The 43-year-old said: âWe have tried him on dozens of anti-epileptic medications over the years and they have failed to work.
âI see the fear in his eyes when he has the seizures. It breaks my heart. He can have anything between 250 and 300 fits a day.
âSome children with uncontrolled epilepsy are getting cannabis and others arenât. There is clear clinical need for this for Ben yet Alder Hey are blocking its own consultantâs wishes.â
Now Ben canât walk or go anywhere because he has a fit every minute or two. If he does get up he will hit the floor
Ben, fromÂ Much HooleÂ in Lancashire, was born with cerebral palsy â aÂ condition that affects muscle control and movement â following a traumatic birth.
His parentsÂ Joanne and Paul, 39, noticed that he would shake down his right side as a newborn. Then he started goingÂ unresponsive and staring into space and he was diagnosed with epilepsy at six months old.
The nine-year-oldâs fits have become more frequent and severe as heâs got older, explained his mother, who has six children.
His condition has caused the youngster â who is a twin â to suffer many injuries over the years and he was rushed to hospital twice this year with a suspected fractured skull.
âWe never stop worrying about him falling and hurting himself,â said Joanne. âWe have bean bags all around the house and we cover the cabinets and sharp edges with bed sheets. But we canât totally eliminate the risks for him.
âHeâs a happy boy who loves life and the water but heâs had a fit while swimming at school and bumped his head. He canât do these things that normal kids do any more because he could die.â
Joanne shared a photo of her husband carrying her son home on a family walk last week, just before he was admitted to Alder Hey last Saturday.
âWe had spent the whole festive period cooped up at home so we thought weâd get out of the house and give the kids a break with a dog walk.
âNow Ben canât walk or go anywhere because he has a fit every minute or two. If he does get up he will hit the floor.
âHe was screaming hysterically while fitting so we had to take him to hospital. His condition is very bad.â
Ben was under the care of Great Ormond StreetÂ HospitalÂ until last year when they told theÂ Griffiths that there was no more they could do for him.
Surgery was discussed but his parents decided against it because it brings a high risk that he will be physically disabled. âHe already has a weakened right side from his cerebal palsy but he can walk â we donât want to cause him any further brain damage,â said Joanne.
After his fits got worse, in October he was prescribed Epidiolexis, aÂ purified form of cannabidiol (CBD).Â It contains less than 0.1% of tetrahydrocannabinol (THC), the psychoactive part of the plant.
More than 50 children in the UK have already been treated with this on aÂ compassionate access programme, The Guardian reported. This is a scheme to allow a patient with anÂ immediately life-threatening condition or serious disease or conditionÂ to gain access to anÂ investigational medical product.
âThe Epidiolexis had a beneficial effect and dramatically reduced his seizures down from around 80 to 100 a day at the time to one to 20 a day,â said Joanne.
Ben has already shown to be responsive to cannabis. We need to find the right type but we are being denied the chance
âBut then it stopped being as effective. His doctors then wanted to try him on a larger dose of an anti-epileptic drug weâd tried before which I was happy to give a go.
âBut his fits got even worse and rose to up to 300 a day and they reduced this medication.
âWe now want him to try Tilray and Bedrocan which come in higher THC form. Ben has already shown to be responsive to cannabis. It may now be the case that we need to find the right type â some THC along with CBD â and dose but we are being denied the chance.â
The Government announced plans earlier this year to assess the use of medicinal cannabis earlier and doctors have been able to prescribe cannabis products to patients in the UK since November 1.
It came after the high-profile cases of two children with severe forms of epilepsy, Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil containing THC.
However, the first child believed to be prescribed medical cannabisÂ in the UK has been unable to gain access to the drug, it has been reported.Â Jorja Emersonâs father, Robin, claims he cannot get the drug because no UK pharmacy holds a licence to sell it.
Joanne said parents of children with severely uncontrolled epilepsy shouldnât be forced to fight for access to the drug.
âAlder Hey say that the effectiveness of cannabis isnât proven but itâs clear itâs helping kids like Charlotte Caldwellâs son so how can they say it wonât help my Ben when nothing else is working?
âThey donât know the long term effects of THC on childrenâs brains but when the risk that their illness will kill them is greater it should be prescribed. That argument doesnât even apply in our case as Ben has the mental capacity of a ten-month-old baby from his cerebral palsy and weâve been told he wonât develop any further.
âWe need the cannabis to control his fits and keep him alive.â
The Griffiths are requesting a second opinion and have asked to be referred to a neurologist in the Netherlands.
Alder HeyÂ Childrenâs NHS FoundationÂ TrustÂ said it cannot comment on individual cases.
A spokesperson said: âNeurologists at Alder Hey will consider whether a child is eligible to take cannabis-based medical products taking into account a number of factors. This includes the clinical history of the child, the scientific and clinical evidence for use of cannabis based medical products in particular clinical situations, and the published guidance from NHS England and the British Paediatric Neurology Association (BPNA).
âAlder Hey always works closely with families to discuss treatment options.â