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Epilepsy and Medicinal Cannabis Awareness
Leading up to Purple Day on 26th March we will be sharing patient stories and real life experiences. Please watch Rocco's short film, made by his family. (may contain upsetting scenes of seizures and strong language)
Rocco is 6 and has a diagnosis of LGS a rare and progressive form of epilepsy. Rocco was diagnosed when he was 4 and we worked with health professionals since then to try and manage and reduce his seizures. Sadly, no pharmaceutical drugs or the Ketogenic diet has helped Rocco and at the beginning of last year we were gravely worried for Rocco as he was suffering from 3 tonic seizures a day, (as well as atonic seizures). His quality of life had drastically reduced as the illness progressed.
We then heard of medical cannabis, through other parents whose children suffer with intractable epilepsies. While we had little hope left, we held our breath as Rocco’s tonic seizures reduced. At our best point, Rocco’s tonic seizures reduced from 3 a day to 1 a month and his quality of life increased dramatically. We were over the moon.
Sadly Rocco’s medical cannabis has risen from £800 a month to £2100 a month, which we have to personally fund as the NHS refuse.
As Rocco’s mother I will move heaven and earth to support Rocco to have the quality of life he deserves through medical cannabis, but I am scared, I am scared of losing our home and how I can make ends meet with my other children to consider. I am scared that despite my best efforts I may not be able to fund Rocco’s medical cannabis long term and his seizures could return.
I wish I could secure funding via the NHS for the only medicine that has ever helped my boy, life has not been kind to him.
However, I am thankful to Intractable the first charity of its kind who are raising awareness of the gap and trying to raise funds to give families like ours some financial relief.
Recently John and Stephanie's situation was highlighted on BBC News
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