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It was on a national stage that Hannah Deacon learned that her son, Alfie, would become the first patient in the United Kingdom to receive a permanent cannabis licence.
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Alfie lives with a rare form of epilepsy called PCDH19 and was experiencing upwards of 500 seizures a month as a child. Anti-epilepsy drugs had little effect, as did a ketogenic diet and immunoglobulins. A steroid injection reduced his seizures but also produced side effects like mood swings, restlessness and headaches.
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image captionBilly Caldwell, pictured with his mother Charlotte in 2018, needs medicinal cannabis for his rare form of epilepsy
MPs and peers are calling for funding for families forced to buy medicinal cannabis for their children privately.
The treatment was made legal with a prescription in 2018 for those with an exceptional clinical need .
But a cross-party letter from 100 politicians says only three NHS prescriptions have been given out since, forcing families to spend thousands on private treatments.
The government said it sympathised with those facing hard-to-treat conditions.
The change in law came about after the high profile cases of Alfie Dingley and Billy Caldwell, who had both been denied access to cannabis oil to treat their rare forms of epilepsy.
Little Clover Carkeet, 22-months, has severe epilepsy which sees her sometimes suffer hundreds of seizures a week. Parents Emily and Spencer claim medicinal cannabis, prescribed through a private clinician, literally changed Clover s life and she now endures one to three seizures a week. But the treatment is unavailable on the NHS and the family fear they could run out of the expensive Bedrolite oil they currently import from Holland - if post-Brexit medication laws do not change. Emily Howis and Spencer, from Frome, Somerset, are now campaigning to make the treatment more readily available. Desperate Emily, 36, said: “At the moment it s costing about £750-a-month.