Hope’s missing her last day of term - we all remember these days / half days as fun & Hope is missing hers because of Epilepsy!

She woke and switched off her alarm, but instantly started to seize. She was knelt up on her bed - staring silently, I went into her as I usually listen for her getting up & out of bed, so not hearing anything was an alarm in itself.

As I went in, I held her & tried to gently manoeuvre her to laying back down, so we didn’t have any fall out of bed scenarios - she started to moan & her head turned left. Her arms and legs were clenched in the position she was in, and I couldn’t straighten them for her so she was initially laid - but still in a kneeling pose - like you had just knocked over a Buddha statue.

After a couple of minutes she started to come round, but not enough to talk to me, or know where she was. I left her to rest & recover & she’d managed to move enough to put her legs down.

After 10 minutes I asked her if she knew what had happened, where she was & then got her to count to 10, she still couldn’t complete these tasks for me & I left her to rest some more.

This is the more normal seizure for us, thankfully she hasn’t fallen in the shower for a while now (touch wood). But there are still danger areas - where she could fall out of bed, bang into walls and crash to the floor, hitting her head is something that happens with most seizures where our first alert is the bang of a fall.

This is why we need The Daisy Garland to help our children with drug resistant epilepsy through their fully funded Daisy Garland Ketogenic Dieticians and Dietetic Support Workers - to date they have funded 26.  The ongoing cost to support this is ever present & the waiting lists in some areas are long, just to get referred. A single dietician can safely manage up to 30 patients on their caseload.  So you know what would help?  Being able to continuously fund more dieticians!

But The Daisy Garland do so much more than provide just dieticians.  They run a fb group - Daisy's Ket Cafe - for parents to learn & share info about the ketogenic diet - a safe place to discuss problems and successes as well as a place to share recipes and your own personal stories.

As well as funding ketogenic services The Daisy Garland also fund grants for night-time monitors many drug resistant epilepsy children need.  These monitors help keep children safe while they sleep and in many cases they literally save lives.

The Daisy Garland need your help so they can keep supporting children like Hope. If you can spare even just a single £1, please donate!   If you can’t, please could you raise awareness by liking The Daisy Garland fb page & sharing their posts.   Hope is asking if you can help fill our virtual fundraising tin!

Sending love & hugs x