Karen Jeffries of Rotorua is working hard to get a type of cannabis oil legalised to be able to treat 7-year-old daughter Zoe.
The plan coincides with the treatment of Nelson teenager Alex Renton, who received a one-off dose of cannabidiol (CBD) product Elixinol after being in an induced coma in Wellington Hospital since April.
Associate Health Minister Peter Dunne last week approved the product, a hemp product high in CBD from the United States, for the 19-year-old who is in "status epilepticus", a form of prolonged seizure.
Mr Dunne said doctors had been able to apply for medicinal cannabis products for many years but it was the first time that avenue had been used for that product. Ministry of Health advice was "50/50 saying that there's no compelling evidence that this product will work. On the other hand there's no compelling evidence it will do significant damage to him".
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Zoe has neurodevelopmental disorder and refractory seizure disorder, due to her brain being deprived of oxygen during birth.
Mrs Jeffries said doctors had given her 24 hours to live but, seven years on, Zoe was still fighting. "It's the ups and downs that make it hard. You can only live each day as it comes ... As a family, we are extremely happy Mr Dunne has shown considerable compassion and approved the use of Elixinol for Alex ...
"In regards to Zoe, she has had a list of seven pharmaceuticals to trial this year. There is one left to try and she still continues to have hundreds of seizures daily. Zoe is my inspiration for becoming a trustee with United in Compassion NZ (UICNZ), a sister branch of the Australian organisation who worked with Rose Renton on Alex's case. As a non-profit we are working towards the goal of medical cannabis in NZ, and doing so from an angle highlighting education, compassion and logic."
Although Mr Dunne stressed the use of Elixinol in Mr Renton's situation wasn't a precedent and shouldn't be seen as a "significant change in policy" Mrs Jeffries said UICNZ was working constructively with the Ministry of Health to change that. "We hope to be able to implement a methodical regime here in NZ. Ideally compassion for one can equate to compassion for all in need."
UICNZ now has charity status and has set up a Givealittle page to raise funds. For more information visit unitedincompassion.org.nz/2015/06/13/united-in-compassion-is-officially-registered-and-seeking-donations/