The 10-year-old was admitted into Whangārei Hospital with seizures. An electroencephalogram (EEG) a week later confirmed Kobie had epilepsy, she said.
His epilepsy type, focal seizures, involves stroke-like symptoms including drooping on one side of the face, numbness and fatigue - symptoms that are not always easy to pick up.
Kobie’s paediatrician also said the seizures are more likely to happen during sleep than when Kobie is awake, Tracee said.
For the solo mum, this meant plenty of worry and sleepless nights as she got up every couple of hours to check on him.
Working with Epilepsy New Zealand and seizure-detection device company Te Wana, Tracee was advised to get a Guardian Solution mat, which sits on Kobie’s bed and can detect when he has a seizure at night.
The mat costs around $3000 and will complement a Hato Hone St John medical alarm for use during the day, at a cost of $105 a month.
“They’ve brought out so many things that can detect the seizures but it all costs money and there’s no funding,” Tracee said.
Over the last six weeks, she has been liaising with Work and Income and, while she qualifies for a child disability allowance, the $50 a week extra does not go far with the current cost of living.
The Ministry of Social Development (MSD) confirmed Tracee does not meet its criteria for its medical alarm funding nor other available supports, including disability allowance, special needs grant and advance payment of benefit.
Fortunately, Epilepsy NZ Northland educator Reokore Johnson advocated for the Schutts to get sponsorship, with Albie from charitable goods store The Den Maungaturoto paying the $3000 for the Guardian Solution mat.
Tracee said she is very grateful, both for the donation and for Johnson going the extra mile.
“Without her, I would’ve been struggling to find this money. She’s done so much, including dropping off a food parcel and going out of her way to find a sponsor.”
Epilepsy NZ chief executive Ross Smith confirmed there is limited funding options available for such monitors.
“It’s reasonably common that people can not get funding for these life-saving devices and they have to resort to selling raffles, asking family and friends for help, and setting up Givealittle pages. It’s all a bit demeaning.”
Before March, some families could use some individualised funding from Whaikaha - Ministry of Disabled People to help pay for these devices. But, with the ministry now restricting what can be bought with this funding, that option is no longer available, Smith said.
There is sometimes ACC funding available, if the epilepsy is related to an accident, he said.
The economic burden of epilepsy could cost New Zealand up to $2 billion a year, calculated from an Australian study which measured healthcare cost, support and loss of productivity, Smith said.
“The economic burden of these long-term conditions is very, very high. That’s why, as an organisation, we try really hard to assist people with epilepsy to live their best life and encourage them to be compliant with their medication.”
About 70% of people with epilepsy are able to control it with medication but 30% can not, he said.
Northland regional commissioner Graham Macpherson said MSD may be able to help with ongoing medical alarm costs, but Tracee’s application was declined based on the information she provided.
“While we sympathise with Tracee’s situation, we are limited in what we can grant within the guidelines we have for the device she has requested.”
Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.
