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Harry’s Story

Harry was diagnosed with Myoclonic astatic epilepsy (Doose syndrome) at two-years-old.

His older brother Ben developed epilepsy at the same age, so when Harry had his first seizure, his family instantly knew what it was.

Unfortunately unlike his brother, Harry’s seizures didn’t improve with anti-epileptic medication, and one seizure a day very quickly became over 100. On over seven medications Harry’s seizures were out of control and he lost the ability to walk and his speech became very slurred.

Desperate, research showed that this type of epilepsy responded well to the Ketogenic diet. After three months in hospital, Harry started this diet, and within two weeks all his seizures stopped. He is still on the diet nearly three years later, and whilst he has had a few seizures happen since he started school in February this year, he is largely seizure free and has no signs of any developmental delays.

The ketogenic diet is a strict medical diet which is low in carbohydrates and very high in fat. Harry has to have his ketone and glucose levels checked several times a day via a finger prick (much like a diabetic).

He is a very happy five-year-old who loves being at home on the farm and riding his motorbike. He also enjoys swimming and BMX.

Harry lives on a dairy farm in south Taranaki with his mum Amanda, Dad Bryce, his older brother Ben who is seven-years-old, younger sister Tessa who is three, and his baby brother Jack who is one year old.