KENWILWORTH parents Hannah and Drew Deacon are hoping to take their five year-old son abroad where he can legally be given cannabis oil to treat his debilitating seizures.
Youngster Alfie Deacon suffers with severe epilepsy which has deteriorated since he was first diagnosed at eight months old.
The Thorn Infant School pupil’s condition is now so bad he is having weekly seizures – each followed by a three-day stay in hospital. So far this year he has managed just two hours at school.
Hannah and Drew – who have shared their bed with Alfie for the past three years due to the severity of his condition – are desperate to try and control his epilepsy and believe the only option left is cannabis oil, which is currently banned in the UK.
The pair – who are also parents to two year-old Annie – are now hoping to raise £25,000 to pay for their son’s treatment.
Hannah, who is full-time carer to her son, said: “Alfie has a rare condition called PCDH19, which is a genetic disorder. It causes catastrophic clusters of seizures which are hard to control and are unresponsive to anti epilepsy drugs. His condition is not well understood and there is currently no research into medication for this condition other than in America.
Thorns Infant School pupil Alfie has been having aggressive seizures on a weekly basis. (s)
“When Alfie has a cluster of seizures currently he has to have an IV of steroids. Steroids are toxic and if used a lot can cause serious side effects. Alfie is currently having seizures on average every seven days so he is receiving a lot of steroids.
“We have done a lot of research into medical cannabis and have found many parents who are using it effectively to either reduce or stop very aggressive seizures.”
The family originally hoped to convince UK doctors to allow them to try the oil, but have now turned to fund-raising.
It would mean travelling abroad – to the USA or Holland where cannabis oil is legal – and paying for the treatment, which is administered under the tongue and costs around £300 for a 100ml bottle.
Hannah said: “Basically my son has no life at the moment. We have to try to raise enough money to take Alfie abroad so we can try this medicine in the hope it gives him the chance of a normal and happy life.”
Search ‘Alfie’s Hope’ on Facebook to donate or find out more.
