Every morning when Christy Cook walks in to her son Kayle’s bedroom she hopes he’s still alive.
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It’s a thought that shouldn’t have to cross a parent’s mind, but Kayle, 10, has severe epilepsy and suffers his worst seizures overnight.
Complicating the issue is the fact that Kayle is non verbal, autistic, has Angelman-like syndrome, OCD and tics in addition to epilepsy. He cannot let anyone know the seizure is starting.
With his epilepsy worsening and medication losing its effectiveness, Kayle and his family have only two glimmers of hope – a specially-trained epilepsy seizure alert dog that can warn Ms Cook of a seizure and allow her to give Kayle medication to potentially stop it, or an approval to trial medicinal cannabis.
With the medicinal cannabis process mired in red tape, Kayle was recently approved to receive an alert dog but the $25,000 cost is a barrier for the family with Ms Cook unable to work and receiving a carer’s pension .
So they’ve launched a fundraising campaign to come up with the money.
Ms Cook said the Smart Pups-trained seizure alert dog would change the lives of the whole family.
“The dog will stay with him 24/7 and if it senses he is going to have a seizure it will go and sit with him, protect and comfort him and bark to alert me,” Ms Cook said.
“If it’s in the middle of the night it will bark and let me know.
“With Kayle’s seizures I have five minutes to give him medication, if it’s later than that it can’t stop the seizure so it’s hospital.”
The constant worry means Ms Cook gets little sleep and is constantly exhausted.
“I don’t sleep well, which I have issues with because I’m exhausted, but I have to be alert. During the night it’s up to my instincts whether to get up and check.
“Having a dog means I won’t have to stress. I worry when I go in every morning that he will be alive, that’s my biggest concern.”
It will also give Kayle some independence, help alert his Ballarat Specialist School teachers to seizures, and give his mother some peace of mind.
“It will give me freedom to go and study. I want to become a social worker but I haven’t been able to do that because of the level of care Kayle needs constantly.”
The dog will be trained specifically for Kayle, taking two to three years, with ongoing vet and visits to check on the dog’s training and performance.
Because Kayle is covered under the National Disability Insurance Scheme, Ms Cook approached them about funding the dog but was told it would not be covered and they would not discuss it.
But the Ballarat community has shown its generous spirit in the early days of fundraising for Kayle’s dog.
Local businesses are hosting collection boxes on their counters, Total Tools have offered to hold a barbecue when the weather warms, a raffle is about to be launched, they have a Facebook page A K9 for Kayle - Seizure Response Dog and the family have set up a Go Fund Me page with the blessing of Smart Pups who have sanctioned their fundraising campaign.
Petstock have also offered to help out with grooming, equipment and other needs when the dog arrives at the family’s Linton home.
