Campaign in memory of beloved son

Ngairena Hartman holds a photo of her son, Todd Campbell, who had epilepsy. Photo by Craig Baxter.
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 said.

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 inside.''

Mrs Hartman will raise awareness by handing out balloons and information in Mosgiel on Tuesday.

rebecca.fox@odt.co.nz

Support for Epilepsy NZ

I had the pleasure of meeting Ngairena and her daughter last weekend at a fundraising stall I was hosting for Epilepsy New Zealand. My partner lives with epilepsy and I could not imagine if I lost him the way Ngairena lost her son. More awareness of epilepsy is needed as there are so many people who live with it or know someone who does. It is a condition that affects both their lives, and the lives of those around them. The day care centre I work at is having a purple day tomorrow to show our support and we are looking forward to having some fun and raising some money to help with research and awareness of Epilepsy.

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