Keeping in mind that at this stage, Jeremy
was diagnosed refractory, had proven not to
respond to medications, was not a surgical
candidate and had undergone surgery for
the Vagal Nerve Stimulator, which also
failed to control his seizures. This one
medication, Sabril, would control his
seizures according to his Neurologist. His
Neurologist badgered me for months to put
Jeremy on this medication until one day we
made rather unamicable decision to
discontinue his care for Jeremy. The reason
I refused Sabril? It has a known side effect
– blindness. Patients must be compliant for
eye testing. Well, Jeremy is far from
compliant and his Neurologist knew this.
So, after all this time as a mum watching my
child suffer I had finally found a safe and
effective treatment for my adult son. I still
am involved with local epilepsy associations
and brain injury networks and know in my
heart that these kids need to be offered
cannabis first line. I know in my heart and
see clinically that cannabis is the most
benign treatment we have EVER given
Jeremy. If I do not pass on this information,
I fail those mums and children who follow
behind us. My hope is that children who
suffer a devastating illness such as Jeremy
did will be offered cannabis therapy. When
this happens in Australia, then I shall enjoy
stepping back knowing that I have done
everything I can do.
He would engage those around him with a
bright and intense intellect. He would tell me
about what he was learning, what he could see
in the world around him, what he liked and
disliked. If it was cold he would say “It feels
windy cold mum” He would tell his pop “She be
do pop” when they were making things out in
the yard. He would tell me he loved me and
understand me when I told him I loved him. His
little voice carried like a song straight to my
heart. After he fell ill, Jeremy could still vocalise
but much of what he said stemmed from partial
seizure activity, repeating words over and over.
The last sentence he verbalised that we could
still understand was. “I feel funny” his brain
under assault from seizure activity as he tried
to describe to us how he felt. “I feel funny” is
the lasting reminder of his voice. My motherʼs
he