Ngairena Hartman holds a photo of her son, Todd Campbell,
who had epilepsy. Photo by Craig Baxter.
On the surface Todd Campbell was a ''healthy, strapping
young lad'', who was the life of the party, but behind the
smile he struggled with epilepsy, a condition which ultimately
claimed his life aged 22.
At his death in 2011, his mother Ngairena Hartman's life
spiralled into a ''big dark'' place and only recently has she
been able to talk about her son without getting too
emotional, thanks to counselling and the support of her two
daughters and partner.
''I'm ready to do this, to talk about it and campaign for it.
I want people to be aware of what it's like living with this
condition,'' Mrs Hartman, of Mosgiel, said on the eve of
Purple Day for epilepsy, which is today.
''There will always be a hole. He was a gentle soul, a
prankster. The life of the party, I'm told.''
While most people with epilepsy were able to control the
condition with medication and live normal lives, it was not
the case for everyone.
For Todd, who was diagnosed when he was 11, finding the right
medication to help him became increasingly difficult, she
By the last three months of his life, he was having daily
tonic-clonic (formerly known as grand mal) seizures, in which
the body becomes rigid, a person falls and muscles convulse.
''He was flatting, doing what boys do, but often missed
taking his medication. I worried all the time.''
His seizures had got so bad he agreed to go into supported
care and his mother signed the paperwork on a Friday.
''The doctor said it might not have saved him as his seizures
were so violent it was affecting his brain. He was becoming
forgetful and confused.''
On the Tuesday, he died in his sleep and was found by his
best friend about 12 hours later.
It was a possibility, unknown to Mrs Hartman at the time,
called sudden unexpected death in epilepsy (Sudep).
Epilepsy New Zealand chief executive Frank Gouveia said Sudep
was still being debated by medical professionals and happened
to very few epilepsy sufferers.
Mrs Hartman said Todd had faced many challenges in his short
life, with the side-effects from his epilepsy making it
difficult to attend school and keep a job.
He was often left with a severe headache and needed to sleep
for four or five hours after a seizure.
''It's not a nice thing to witness. At school they thought he
was a freak and he lost friends, although a group of six
stuck by him.''
His seizures were violent, often resulting in trips to the
hospital after he had bitten the inside of his cheek or
tongue, she said.
''He fell into a rose bush once. Another time he fell into an
artificial Christmas tree and a branch went into his cheek.''
He was home-schooled until his seventh-form year and had
tried a few different jobs but continued seizures meant for
safety reasons he was often let go.
''To everyone he looked like a healthy, strapping young lad,
but because of that they did not know what was going on
Mrs Hartman will raise awareness by handing out balloons and
information in Mosgiel on Tuesday.