Thanks for taking the time to visit my JustGiving page.

Finley is 8 years old, he was diagnosed with multi focal seizures almost 3 years ago, last year he started behaving very strangely, was slurring his words, having awful angry outbursts, and couldn’t remember things he’d previously known. He was then diagnosed with a rare form of epilepsy, that only effects 1 in a million children with epilepsy. Doctors at the Great north children’s hospital liaised with Professors at Great Ormond Street Hospital and put Finley on an experimental treatment plan, the drugs lowered his immune system which is especially dangerous during COVID and made him gain a tonne of weight amongst other things. Poor kid mastered taking 12 tablets and 5 syringes of awful tasting medicine a day for the past 12 weeks. He seems to be on the mend but we won’t really know until he’s been on treatment for a year.

Things aren’t as straight forward with the treatment, we’re currently seeing signs of regression again. Looks like we’re heading back for more testing and possibly another course of treatment! Now more than ever, we need the help of research to try and figure out what is going on.