We are Chris Fox, Dan Hyde, Sean Sweeney, Stuart Roberts, Chris Capes, Jody Payne, Neil Smith, Dom Leeson, Michael Winstanley, Rich Howell, Rich Nichols, Si Hughes and Nick Horder.

A couple of years ago we got together to raise funds to support Eddie Braun. A little boy who faces a multitude of challenges. Now we are back, because, while things for Eddie have improved a little, the reason for this improvement is his use of medicines that cost over £2000 every 5 weeks. Despite prescriptions being made available by private paediatric neurologists, NHS doctors are reluctant to prescribe because they know that NHS trusts will refuse to pay for these medicines. This leaves Eddie’s parents having to find somewhere in the region of £20,000 per year.  

Eddie’s Mum and Dad have witnessed the benefits of medicinal cannabis to their son for well over 2 years now. In this time Eddie has been weaned off all other anti epileptic medicine, many of which can have awful, even damaging side effects.The medicine has stopped Eddie’s Infantile Spasm type seizures, and significantly reduced the burden of his myoclonic jerks from around 250 per day to about 50. Eddie has also not been admitted to hospital with a prolonged focal or tonic seizure for over six months. The NHS have not had to pay for any medicine for Eddie since October 2018. As his sleep is hugely improved they are looking into reducing the respite overnight care provided twice a week. And yet despite all these cost savings they are still not willing to fund this life changing medicine.

Since the progress Eddie has made in controlling his epilepsy, he has developed significantly. He is far more aware of his surroundings. His comprehension has significanty improved. He is alert and his vision has improved. And he is slowly becoming a little more mobile. He is a very happy, sociable little boy with a lot to say and he is due to start school this year. He is now, for the first time in his life, sleeping all through the night. This, whilst not only being a relief to his parents, means that his brain is experiencing deep sleep which is so very important for neurological development.

With this medicine offering such life changing benefits, Eddie’s parents know that he can’t do without it. However the burden of the cost is overwhelming and they face the awful prospect of not being able to afford the medicine in the future. Should this happen, they would be staring at the terrifying prospect of Eddie’s seizures returning and the consequent catastrophic effect on his development.