Zak - Age 8

Say Hi to Zak!

This little beaut turns 8 in just 3 weeks time. Double what his life expectancy dictated.
Zak was born on St.George’s Day 2007.
He had his first seizure in the minutes after his birth.
His Epilepsy is symptomatic of the brain damage caused by medical negligence.
After his seizures in neonate settled down, we saw a 10 day break….our longest since!
He had his first tonic clonic seizure when he was just weeks old.
Over time we saw clusters of spasms.
He was misdiagnosed initially with having reflux….
a dairy intollerance….
Sandifer’s Syndrome….
‘just brain damaged’….
nobody really knew!

Until I explained to a Neurologist what he was doing and suddenly it became an emergency situation.
At 8 months he was diagnosed with West Syndrome. The treatment made it worse not better.
By 18 months he had developed several new seizure types. Mostly Tonic in nature.
He was hospitalised because they were so frequent, and was tested for Tuberous Sclerosis.
…..but the results came back with a new diagnosis….Lennox-Gastaut Syndrome.
Intractable Epilepsy, multifocal, symptomatic epilepsy….all have described his Epilepsy at some point.

Today, Zak has in the region of 20 clinical seizures a day.
They are worse when he’s going to sleep or waking up.
Sub clinically his brain is constantly seizing, which has left him with the developmental ability of a newborn.
He is yet to meet a milestone.
Zak has many diagnoses, but Epilepsy is the one we fear most.
We have no way of knowing which seizure will be his last.
Until then……. we live for today!

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