Carterton teen Grace Yeats, celebrating with her niece Ellie on her third birthday. PHOTO/SUPPLIED

HAYLEY GASTMEIER
hayley.gastmeier@age.co.nz

The past six years have been an uphill battle for Carterton mum Tracy Yeats.

Her daughter, Grace, was struck down at age 10 with a rare condition that robbed her of speech and movement.

Grace was the 13th person globally to be diagnosed with an incurable variant of acute disseminated encephalomyelitis, or Adem, which left her physically trapped but cognitively unimpaired.

The anniversary of that fateful day is next week.

“We refer to it as her sickiversary,” Mrs Yeats told the Times-Age.

Having celebrated her 16th birthday in March, Grace “loves” going to school at Chanel on days when she is well enough, and has a fondness for Ed Sheeran, like many other teenage girls.

Many milestones have been celebrated in the Yeats household during the past few years, such as when Grace taught herself to communicate via an iPad, or talked for the first time since becoming ill.

One thing that has made a massive difference in easing Grace’s suffering is cannabis.

She was prescribed Sativex, a medicinal cannabis spray in 2015 and saw significant improvements in her health as a result.

Mrs Yeats said while the spray was “an extremely effective tool”, just over a month’s worth set her back $1100.

The cost of the treatment was covered by the remaining generous donations made to Grace via an old Givealittle page.

Less than two weeks ago, Mrs Yeats set aside her nerves and stood before a select committee at Parliament, speaking to her submission on the Misuse of Drugs (Medicinal Cannabis) Amendment Bill.

The bill will introduce an exception and a statutory defence for terminally-ill people to possess and use illicit cannabis.

“The legal defence does not extend to their family or carers, or the people that might have to procure or provide or grow it for them if they’re incapable because they’re dying,” Mrs Yeats said.

She said the bill, as it stands now, does nothing to help Grace, who has a “chronic lifelong debilitating condition” that is not “terminal”.

She said the bill should be extended to allow people to grow their own medicinal cannabis, until an industry was established in New Zealand.

“Who knows how many years away that will be but in the meantime, we need that defence.

“They need to make it safe for people who are going out to buy what they need – you don’t want to be dealing with [gangs] – we want to know where it’s coming from so you can have faith in what you’re giving the [ill] person or taking yourself.”

It was important the cannabis was of top quality and grown pesticide-free.

Mrs Yeats’ submission outlined the exorbitant cost of the cannabis treatment, which she said needed to be affordable for people like her daughter.

She said it was “a harrowing experience” listening to other people’s oral submissions.

“[The committee] had to sit through some amazing stories of healing, sad stories about partners having to provide it for their dying spouse . . . it was very sobering.”

Now it was a waiting game to see what decisions the select committee made.