I am Standing up to Seizures this Purple Day and supporting the vital work of the Epilepsy Society. Please donate generously!

As many of you already know, our amazing boy, Ruben aged 10, has been diagnosed with epilepsy. This impacts on his life daily. It affects his ability to concentrate on his learning because he will miss bits when he has an absence and he has to try and piece things together. It also affects his short term memory and ability to retain his learning. Just some of the reasons he has to learn from home with one to one support to accommodate his needs.

His absences also affects him being able to go out and play on his own with his mates. Something he is now wanting to do. But I can’t let him, if he has an absence and then crosses a road… yes he will still carry on walking and moving whilst not having consciousness! It’s kinda scary!

Everything he does he has to be accompanied until we can get his seizures under control. We are not there yet. It’s a long journey.

We are a year down the line and on our third type of medication. The seizures have reduced but not been eliminated. We will keep going. Trying higher doses or different types of medication. Each with their own side effects and titration timetables.

It’s a lot for an active 10 year old boy! He doesn’t like it when he has to hide in a shed on fortnight so he can take his meds without getting shot!

More research and newer meds are always much needed to help children (and adults but especially children) get on with being kids like all their mates.

Thank you for reading and any donation you can spare xxx