Warrior of the week 12

Sophie selby image

So my little boy is called Archie, he is two and a half and he currently has at least five seizures a day. Archie first started having spasms when he was ten months old, although he didn’t get diagnosed until months later. When we first went to the GP with a video of the spasms she told me they were normal movements. Archie then had several EEG scans, MRI scans and blood tests that confirmed it was infantile spasms, they still have not found what the cause is.
Archie has been on around eight different medications including steroids and nothing has controlled his spasms, we are being admitted to hospital next month to start the ketogenic diet. His latest EEG showed that his spasms are unfortunately morphing into lennox gastaut syndrome.
Archie is extremely developmentally delayed, he can not talk or understand what we say to him. We currently see a speech therapist and a portage worker and are looking at sending him to a specialist school. Archie is such a happy, caring and loving little boy, and we won’t let his illness get in the way of him having a happy life 💜


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