Hey everyone,

I'm Karina, mum to Freddie who is 13 and suffers from Sturge Weber Syndrome which includes drug resistant epilepsy. To be honest, I always thought these pages were a bit unnecessary but now we are in this situation I kind of understand.

On Saturday 14th February at about 4pm I went into Freddie to find him slumped in bed after a seizure, an ambulance was called and we went into Peterborough Hospital.

After 3 hours we were discharged, but once home Freddie was sick and needed to go back in for anti sickness medication to help keep his anticonvulsant drugs down. So back to hospital we went, then again at 1am we were discharged again because he had kept his meds down and there "was no medical need" for him to stay.

After taking him home, having to carry him upstairs to bed, lift him to the toilet or try and assist him to the toilet (hard with a 5ft5 13year old!) we managed to sleep however in the morning I felt Freddie was still not in a good way and needed to be seen again.

Since Sunday we have battled with doctors and consultants to get them to follow his care plan. We realised that what we thought were shivers were actually Seizures and so he's been having cluster Seizures since 4:30pm Saturday evening.

At 4pm Monday night he was finally intubated and brought over to Addenbrookes hospital, where he's remained intubated since then, we are hoping for an MRI at 5pm on Tuesday 17th to see what's happening with his brain and if there is any reason for the prolonged weakness and hemiplegia in his left side.

Me and Ryan are currently in Acorn House on site which is really helpful and lovely.

Honestly, the reason I've created this is to help us out with any food, a few toiletries etc things to help us whilst we are here as I don't know how long that will be, but also fuel to get home for Paige if and when needed. we are also looking into a seizure monitor device, the types of seizures Freddie has are not your typical seizures and so having some form of monitor would be so useful to give us some peace of mind and help us track any seizures we haven't noticed or aware of.

We also don't know what the future looks like right now, there is a possibility that this weakness is permanent and what adjustments will be needed such as a wheelchair for now we just don't know.

Anything we don't need will be used to create care packages for the nurses on the Amazon Ward, PICU at Addenbrookes and Acorn House.

Thank you ❤️