Belinda Buckland longs for a better quality of life for her daughter.
Belinda says seeing seven-year-old Asher suffering seizures is a devastating and powerless feeling.
“The fear and panic on her face is heart-breaking. She would cling to me and just keep saying ‘feel bad,’ most of the time there is nothing you can do for her but be there, give her hugs and keep reassuring her.”
Asher suffers from the extremely rare Dravet Syndrome, a form of epilepsy that lasts a lifetime.
Fortunately, there is a medicine that exists to help control Asher’s seizures.
Unfortunately, obtaining it is causing significant financial strain for the family.
Asher takes Charlotte’s Web CBD oil of which there is some anecdotal evidence to suggest it might help sufferers of epilepsy.
The Buckland’s say it helps Asher but are forced to shell out thousands of dollars to ease her suffering.
“Her dose is only limited by finances, there is so much room to increase, but the cost is the only barrier.”
Asher endured her first seizure at just four-months-old.
Just before her first birthday, she had 12 seizures in less than 24 hours.
This is when she started antiepileptic drugs.
However, it wasn’t until discovering CBD oil that Asher’s seizures began to become less frequent.
Factoring in her age and weight, doctors recommend Asher take 500mg of CBD oil a day to control her seizures.
However, due to the cost barrier, she is only able to have 50-100mg.
A 50mg bottle of CBD oil through the Bucklands’ suppliers costs $120.
“It helps, but it is not enough to control the seizures. Some days the emotions become too much but you have to get stronger to cope with them.”
After relocating from South Africa 13 years ago, the Buckland family moved from Canterbury earlier this year to Nelson to have more care available for Asher.
The move meant they would double their mortgage while her father Brendon took a lower salary.
“Although it’s been a huge financial strain moving to Nelson from tiny little Hawarden, we know it’s been the absolutley best thing for our family,” Belinda says.
As a family of eight, Asher’s family have made a number of sacrifices in order to fund her special needs.
“We don’t have holidays, or meals out. The biggest treat for the children is getting hot chips occasionally.”
Belinda says she is grateful the siblings are all so caring towards Asher and understanding of the challenges she has.
“They are used to mostly having hand me down clothes and the cheapest shoes. Sometimes I feel sorry for them, but you just focus on trying to make memories.”
Asher attends Victory School, via a satellite programme. She loves going to the beach and bouncing on a trampoline. However, she must avoid these activities out of fear of triggering an epileptic seizure.
Her family must be on constant alert as one minute the seven-year-old can be gleefully splashing in the water, the next she can be violently convulsing.
“It is hard to keep her away from the water because she loves it,” Belinda says.
It has been a particularly tough year for the Bucklands with the Coronavirus pandemic striking shortly after resettling.
“We couldn’t get workers in, it was pretty full on, but you get by. You have to.”
Asher needs extra help with daily tasks such as brushing her teeth and hair. No matter how much Asher shouts, kicks or hits, Belinda remains calm.
“There is nothing else you can do.”
Even putting on pyjamas can be a violent affair. Insomnia and incontinence are also consequences of her antiseizure medication.
“It’s a constant juggle, you want the best for her, but you have to weigh up the side effects,” Belinda says.
When on CBD oil, Asher has been having just one or two seizures a month compared to the average of 11 a month in 2017.
However, the oil is no longer available in New Zealand.
“It’s not cannabis, it’s not hallucinogenic, it important for people to realise that.”
Without CBD, Asher’s seizures become more frequent, and her behaviour more violent.
“In four weeks off the oil, she had five seizures and her behaviour had deteriorated. She was hitting her teachers and the other children at school and it was just getting worse every week.”
To get her daughter back on the right oil, Belinda contacted a friend in the United States who acts as a go between.
“I buy the oil directly and have it shipped to her; she then ships it over to us in New Zealand. We have already seen the benefit on seizure control.”
Belinda hopes to get the right dose for her so they can get as much seizure control as possible.
“We have no idea how much she could improve with her learning and speech, if her neurological activity was able to be calmed more. We want to see what its potential is, maybe we can get her seizure-free.”
To help fund the cost of Asher’s medication, Belinda has created a Givealittle page.
Thanks to its donations so far, Asher has been able to increase her CBD intake from 50 to 100/ mg a day.
To help the Buckland family fund Asher’s medication please go to her fundraising page here- Givealittle.