Hope for Charlie

Charlie suffers with a rare form of Epilepsy called Infantile Spasms or West Syndrome and as a result of this condition he has Global Development Delay. 

He was diagnosed at 10 wks old when he began to have spasms.

Unfortunately this type of Epilepsy has a catastrophic impact on Charlies development. He is unable to learn the crucial skills we all learn as babies. He can't talk, walk, unable to hold a bottle, feed himself properly, fine motors skills are weak. All the basic functions to have a little independence are missing and as he gets older he falls further behind in his milestones. He will be 2 in July and his development is over a year behind. 

Charlie had undergone many tests, genetic, MRI, EEG and PET among a few, and at present everything has come back clear. There is obviously a cause to his Epilepsy but it remains unknown until science better understands the brain.  

In September 2017 we began a course of strong steroids and an Anti-Epileptic, initially it was successful and he was spasm free and brain activity was normal. Once we had weaned off this combination in January 2018 his spasms returned along with the hypsarrhythmia brainwave pattern. Since then we have tried 6 other antiepileptic drugs and the Ketogenic diet all of which have failed to control his spasms. 

We began to look at alternative therapies, and a particular plant kept cropping up as a good therapy to stop seizures in epilepsy. 

After many months of research, speaking with other parents who had success, and expert doctors in the field and after joining the End Our Pain Campaign, we began administering full extract oil.

Initially there was no response, so changed brands. Then as we increased the dose we noticed spasms were coming down each day and he appeared brighter and more alert. We reached a point that his spasms had reduced from 100 to between 30-40 a day. 

In March we campaigned in Parliament to allow access to Medicinal Cannabis on the NHS, so we wouldn't need to be funding his medication. 

We asked for a prescription on the NHS for a GMP certified oil, but it was refused, we asked again in April and again we were refused. 

At our last consultation and EEG there was evidence his Infantile Spasms was transitioning to Lennox Gastaut Syndrome, another severe form of Epilepsy.  So the race is on to bring about a stop to his spasms and epileptic brain activity and the clock is against us. 

In May we travelled to London to see a private neurologist and they agreed that this new medicine was the next step. We now have access to GMP certified oil. Since increasing his dose further we have seen a small decrease in spasms down to between 20 and 30 a day. 

We are hopeful that as we increase and get to his therapeutic dose his spasms will be under control completely or in very low numbers.

Unfortunately because its a UK prescription we have to pay tax and import fees as well as the markup of the pharmacy. So his initial prescription was £1300 for 3 x 10ml bottles. 

I do have savings which will cover the next few months worth of prescriptions, but as we increase his dose each week, the oil runs out quicker so the money I have will soon be gone. 

We are now looking to Amsterdam as a cheaper alternative although we will be breaking the law by returning with his medication. 

We are however continuing to fight for him and other children to access medicinal cannabis on the NHS. 

Thank you all for your help and donations. 

Matt, Ali and Charlie.