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Harry’s story

“A beautiful baby healthy at 36 weeks was born – a very cheeky and happy wee man named Harry.

Harry was meeting all of his developmental milestones, until at two years and four months old Harry had his first drop seizure, and seconds later our lives suddenly changed forever.

We knew what epilepsy was, our eldest son also had it, but nothing could have prepared us for the road ahead. Following an abnormal ‘EEG’, Harry started anti-epileptic medication, and he wore rugby headgear to help protect his head.
The medication didn’t work, and one seizure a day very quickly became over 100. Harry struggled to walk and talk.

We added more medications, numerous injections three times a day, IV infusions, and put him in a full face helmet to prevent the ongoing injuries.

Epilepsy took over our lives. We spent 70 days in Taranaki Base Hospital, and 20 days in Starship for more tests and medications.

The medication had side effects – weight gain from steroids, and Harry refused to eat and drink, his prognosis was not good – a “catastrophic” seizure disorder, also known as ‘Doose Syndrome’ – (severe epilepsy in laymen terms).
The boy we once knew had gone.

Desperate, all hope now rested on the Ketogenic diet. A diet low in carbohydrates and high in fat, to put Harry into ketosis.

Day four of the diet things were improving. We were given a 50% chance it would work, and at exactly two weeks the seizures stopped. We slowly started to get our Harry back.

With no signs of any delays in his development, and two years later he is still seizure free. You never know how strong you are, until being strong is the only choice you have.”

– Amanda, Harry’s mum.

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