The family of one little Kiwi girl are hoping to raise the profile of the rare genetic disorder CDKL5 which marked its international awareness day yesterday.
Only 2000 people in the world have the disorder, which causes seizures that can last up to 15 minutes, leading to severe developmental delays.
The Emery family is hopeful that breakthroughs in medical marijuana can help their daughter, Amaria with the condition by controlling her violent seizures.
"She looks terrified and scared when she has the moments. It's really hard to deal with because nobody wants to see their child scared," Amaria's father, James Emery, told 1 NEWS.
"We just want to reduce the number of seizures she has which gives her the best chance of developing."
The medicinal cannabis bill is set to be debated in Parliament this year after being pulled from the ballot box.
The bill would make it legal for New Zealanders who are suffering from terminal illness or chronic illness to use cannabis or cannabis products with the support of a registered medical practitioner.
The developments are something the Emery family and the five other New Zealand families who are affected by CDKL5 will be keeping a close eye on.
But eventually they want to find a cure.
"Maybe we can't make a huge amount of difference for Amaria, but if I can help a child further down the track get better then that’s success to me," Mr Emery said.
Varnish cache server