Nine of the One Voice team are doing an 18 mile walk, The Templer Way, on Saturday 23rd June, fundraising for The Daisy Garland. This is an incredible charity based in Totnes and operating across the UK which supports families living with drug-resistant epilepsy. This is a charity that is particularly close to One Voice’s heart. One of our team, Sharon, has a four year old daughter with a rare form of drug-resistant epilepsy. She was diagnosed with epilepsy at 18 months old.
Here’s Sharon’s story;
Taz (nickname) had her first visible seizure at 18 months old. It was terrifying. We hoped it was a one off but she then had another two weeks later. Shortly after this she started ‘blacking out’ and dropping to the floor up to 20 times a day. We then spent a surreal six weeks being tested for various (very serious) illnesses. Our anxiety eased as the medication seemed to work and lots of tests came back normal. We felt ‘out of the woods’ only to be confronted with more seizures (this time a new type) a few months later. Since then it’s been a juggle of meds and Taz’s epilepsy is now classed as ‘drug resistant’. She is now 4 and continues to have abnormal brain activity and seizures as well as various developmental delays. Taz is a fabulous little girl (frequently described as a ‘livewire’) with endless energy and an extremely busy brain.
Recently Taz lost all of her speech through her epilepsy. It was heartbreaking. Prior to this her speech had been developing slowly but surely and she could use four word sentences. She became totally non-verbal and walked around in a daze, we were devastated, it felt like we’d lost our little girl. Shortly after this we started Taz on the ketogenic diet on the advice of our consultant. This is an extremely strict diet, tailored for Taz and managed by a hospital dietician. Everything we give her, for every meal, has to be weighed to the gram. You can read more about it and what it involves here. Taz has recently started to ‘switch on’ again and she is getting some words back. I find it hard to put into words how wonderful this feels, it feels like she is coming back to us. The diet is a lot of work but it feels like we are able to do something to help our little girl. Without The Daisy Garland, the diet would simply not have been an option for us. They have funded 14 ketogenic dieticians in hospitals across the UK (one of which is Taz’s) – each dietitian costs up to £47,000 per annum.
Sharon also writes a blog, read it here.
The charity also provides monitors to help keep children with epilepsy safe while they sleep. We have a monitor which alerts us if Taz has a seizure in the night – we’d be lost without it.
Please give what you can to help this amazing charity that’s changing lives >> https://uk.virginmoneygiving.com/Team/TeamOV.