Sienna has a rare condition which means she has epileptic fits several times a day. Picture: Leesa Smith

Despite riding many highs and lows — the eight-year-old girl has lived an active and happy life.

“This time last year she was playing netball, in Cubs and in the cheer squad,” her mother Yvonne tells Kidspot.

However, all of this tragically changed at the beginning of this year.

“I have had to watch her cognitive ability decline — going from an IQ of 90-100 to a range from 41-52. She has now been diagnosed with a severe intellectual disability.”

Yvonne says her daughter is a ‘shell’ of the person she once was. Picture: Leesa SmithSource:Kidspot.com.au

Yvonne and her daughter Sienna. Picture: Leesa SmithSource:Kidspot.com.au

Yvonne and her partner Daniel used to resuscitate their little girl about twice a year — but now they can bring Sienna back from the dead multiple times a day.

“Last Friday, we resuscitated her four or five times in two hours,” Yvonne says.

“She turns blue and in the back of my mind I think ‘please pull through’ and finally she takes another breath and I think ‘thank goodness’.”

Sienna was involved in cubs, netball and cheerleading last year. Picture: Leesa SmithSource:Kidspot.com.au

Sienna has Doose syndrome — a rarer form of epilepsy which is often drug resistant and only affects one to two out of 100 children with epilepsy.

Her condition dramatically worsened three months ago when Yvonne says a specialist told her to “downplay and ignore” her daughter’s seizures.

“She would seize for up to 18 minutes at a time. I have no doubt this is what has left her severely disabled,” Yvonne says.

Sienna was an active little girl until the beginning of this year. Picture: Leesa SmithSource:Kidspot.com.au

The heartbroken mother describes her little girl as “just a shell”.

“Now she’s like a zombie in a wheelchair — she only says a few words. Most of the time she is just seizing and sleeping — it’s just so sad.”

Yvonne believes she is left with no choice but to give her daughter medicinal cannabis.

“We’ve been through five specialist doctors unable to help her. Right now she’s on eight different medications and still experiencing over 100 seizures per day. I’m beside myself.”

Daniel and Yvonne have had to resuscitate Sienna several times. Picture: Leesa SmithSource:Kidspot.com.au

Although medicinal cannabis was legalised in NSW last year — it’s not that simple to access it legally.

“Red tape is leaving Sienna’s doctors unable to fast track her lifesaving access to medicinal cannabis,” Yvonne says.

“You need to get a prescribing doctor and they’re also equally as difficult to find and the supply in Australia isn’t here. The drug is all imported, therefore no supply in Australia — except the black market.”

To prescribe other cannabis-based medicines doctors require an authority from both the Therapeutic Goods Association and NSW Health which is often a long process for approval.

To add to the waiting game — there are yet to be any regulated suppliers in Australia — therefore the reliance lands solely on the international market.

Federal health minister Greg Hunt says the importation rules won’t be relaxed until there’s an Australian industry that’s up to the task of meeting demand — however, this will also take time.

And time is something that Yvonne is rapidly run out of.

“I don’t want to break the law, but I don’t want to bury my eight-year-old child. I am left with no options — Sienna suffers up to 100 epileptic seizures per day, each one life-threatening,” she says.

“Now every seizure is a step closer to death. Right now we are being forced to sit back and watch our baby girl dying in front of us and not a single doctor in NSW can help us. This is cruel and devastating.”

Yvonne’s asking for Health Minister Brad Hazzard’s help with the change.org.au petition.

A NSW Health spokesman said: “Legal path ways have been established in Australia for doctors to prescribe, in certain circumstances, medicinal cannabis for their patients — and they have been doing so in NSW for a number of years, including through clinical trials.”

The spokesman said a number of children with severe epilepsy were currently accessing “cannabidiol-only product through a compassionate access scheme sponsored by the NSW Government”.

This article originally appeared on Kidspot.com.au.