For nearly a decade, Kelly Gallien stood by helplessly and watched her little girl’s body wrack with uncontrollable seizures.
Diagnosed at two with a rare and incurable form of epilepsy known as Dravet syndrome, Paige would convulse at least 500 times a month. Some nights, she would have 20 seizures, the longest lasting more than an hour.
Single mum Kelly has lost count of how many times her daughter has stopped breathing and went blue in front of her.
“We came close to losing Paige on more than one occasion,” tells Kelly, who lives in Hamilton with Paige, 13, and son Mason, 15.
Kelly says her girl’s short life has been ruled by seizures. During the rare periods in between each bout, she’s often left exhausted. “For Paige’s body and brain, a seizure is like running a marathon.”
While doctors spent nearly 10 years experimenting with different drugs, Kelly grew accustomed to being on high alert. She gave up work to be with Paige and – until recently – rarely let her out of her sight. If they left the house, Kelly travelled with oxygen and emergency medication. “I’m an arm’s length away from her 24/7,” tells Kelly. “She’s Paigey – she’s my girl.”
Various concoctions of drugs had little effect on Paige and for years, her life-threatening seizures continued full-throttle.
Hope came two years ago in the form of medicinal cannabis. In 2014, Paige became the first New Zealand child to be approved for Sativex, a pharmaceutical mouth spray containing cannabis extracts. Sativex has been legal here since 2008, but it is difficult to obtain and can be prescribed only with ministerial approval. Currently, just 38 Kiwis take Sativex.
Kelly says the bureaucratic battle for access took six months. “We were at our wits’ end, and we fought tooth and nail to get it.”
For Paige, there were no guarantees it would work, but within days of using the mouth spray twice a day, she became a very different little girl. The constant tremor in her hands stopped, her seizures calmed down from 500 a month to between five and 10, and for the first time, the young girl was able to draw a complete circle and finish an easy puzzle.
“The results were nearly instant,” recalls Kelly. Paige is now a full-time student at Hamilton North School, a special-needs facility in the Waikato. Paige was born apparently healthy but had her first seizure when she was six months old.
“She was playing on the floor and her arm started trembling,” remembers Kelly. A friend who is a nurse recognised it as a seizure. Paige was rushed to hospital, where a second seizure lasted 75 minutes. When she was diagnosed, doctors prepared Paige’s family for the worst.
It is not uncommon for children with Dravet syndrome to end up on life support or die. “They told us she wouldn’t survive past the age of nine or 10,” tells Kelly.
But while Paige has defied the odds, her recurrent seizures have left her brain damaged. She is vocal but speaks in only one or two-word sentences. “Paige is more like a three or four-year-old than a 13-year-old,” says Kelly. “She loves colouring in but won’t stay within the lines. She loves playing in the park and she loves to cuddle soft toys.”
Like many kids with Dravet syndrome, Paige has growth issues and low bone density. Kelly is constantly trying to feed Paige high-calorie foods to add to her tiny 24kg frame.
Yet despite it all, on good days, she is a chatty and happy young girl. “Paige is a smiley, loving, caring wee soul.” But after two good years on Sativex, Paige may be running out of time. “I’m freaking out,” admits Kelly. “Now I’ve seen how good Paige can be, I don’t want her going backwards.”
Since Pharmac doesn’t fund the drug, the cost for Kelly has been a crippling $1000 a month. Until now, the doting mum has made ends meet thanks to a major fundraising drive two years ago, mostly with the help of the Stragglers car club. That money is due to run out in about a month.
Kelly’s hoping for a miracle but is now faced with a hard decision. She says she’d break the law for her girl’s wellbeing – there are illegal products that aren’t hard to find. Like many people, Kelly wants medicinal cannabis to be more available for those who need it. A TVNZ Colmar Brunton poll earlier this year showed 73% of Kiwis supported the use of marijuana for medical purposes.
“Yes, I would source illegal medicinal marijuana for Paige if I had to,” she insists. “Why wouldn’t I? It’s natural and I know it works in controlling her seizures.”
As a parent, Kelly just wants what everyone else does – the best for her child. “Paige is my baby and I love her so much,” she says. “My little girl deserves a quality of life like any other child. I just want her to be the best she can be.”