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“I can remember looking into my beautiful baby girl’s eyes for the first time. Sienna was the

spitting image of me, with blonde hair and sharp blue eyes. I’d had a few scares during pregnancy, and went into early labour, giving birth at 35 weeks.

We settled in well at home and and I quickly adjusted to motherhood. When Sienna was about five months old, I noticed she was doing weird jerky movements during her sleep but the childhood nurse assured me it was normal newborn reflexes.

One morning, I was driving when I heard a choking sound. I looked in the rear-view mirror and could see Sienna’s eyes had rolled back and her body was shaking violently. I stopped the car and took her out but I had no idea what to do. She calmed down after a few minutes and I rushed to the hospital. The doctor said it was a one-off incident that could’ve come about because of a high fever, but Sienna didn’t have a fever.

She seized again two months later but we were sent home from the hospital and I was told to keep an eye on her.

One night, after her first birthday, Sienna had a high fever so I put her in bed with me. I woke up suddenly during the night, as if I’d been punched in the face. I found Sienna shaking violently next to me. Her hands and arms were stiff. I called the ambulance and watched for 10 minutes as her seizure continued. That week, Sienna was diagnosed with epilepsy and put on various medicines. The neurologist told me she’d grow out of it.

Sienna was a happy baby. She learnt to walk at 16 months and was speaking at 3. She still had seizures four or five times a month, triggered by everything from loud noises or bright lights to fear, temperature changes and excitement. She

was diagnosed with autism when she was 4, which brought on outbursts and tantrums, and triggered even more seizures.

I made her wear a helmet to protect her head but I still had to watch on helplessly every time she had a seizure.

Instead of getting better, Sienna was getting worse. She was seven when I started losing her. In July last year, she had more than 170 seizures in just one weekend. The doctors couldn’t tell me why and they didn’t know how to help her. She continued having a seizure every day from then until October, and then it went back to four or five a month.

Sienna took it all in her stride and never cried. I could see the fear in her eyes, though, because like me, she didn’t know when the next seizure would hit.

In January this year, she started having 100 seizures a day and she’d stop breathing every time. We’re still yet to find out if the seizures have damaged her brain and her organs, but she’s been diagnosed with a severe intellectual disability. All of a sudden she couldn’t talk properly. She couldn’t play. She sat in front of the TV or slept all day. I could sense her anger and frustration – my happy child was gone.

Sienna was taking more than 45 tablets a day – addictive and harmful drugs with severe side effects. Desperate to help her, I studied alternative cures and read about cases where medicinal cannabis had helped kids like her. I realised I could give her the fighting chance she needed but sadly there was no immediate supply in Australia.

Every day I watched as my daughter faded away. She was deteriorating so fast, I knew she didn’t have much time, so I began a petition to get her urgent access without the red tape. I know other people who administer medicinal cannabis to their children illegally and I’ve seen the many benefits it has when treating their seizures. A

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Real life

Sienna, 8, suffers up to 100 seizures a day, but her mum Yvonne, 33, says the one thing that could change her life is out of reach

“My daughter is fading away without medicinal cannabis”

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This is a pathway I could take, too, however, because I’ve worked in drug and alcohol education, my preference would be to administer medicinal cannabis legally and under the supervision of a medical doctor to avoid any contraindications with Sienna’s medication.

Plus, if I give it to Sienna after getting it illegally, I risk going to

jail and then she won’t have a mummy. Or what if I gave her the wrong dose and something happened to her – would I be charged with murder? I just want my child back.

I’ve asked numerous doctors and specialists in NSW but nobody has been able to guide me to a doctor who’s authorised to prescribe medicinal cannabis. There’s also a supply issue, despite the fact the government

has laid claims to quick and fast access for patients.

Our local MP in Wollongong, Paul Scully, has helped us by taking my petition to parliament in its last sitting in June. It has more than 90,000 signatures and asks for supply to be made immediately available and at a realistic price. Hopefully that happens before it’s too late for Sienna and the damage is irreversible.”

47%The proportion of children with epilepsy who

(at least) halved their number of seizures by

taking medicinal cannabis, a

US trial of 261 children found.

Source: Comprehensive Epilepsy Center, New York University

Langone Medical Center

What is it?Medicinal cannabis (MC) is grown to a high standard, and can be ingested via oils or capsules, or inhaled. The type used for epilepsy in children is cannabidiol, an anti-convulsant that doesn’t contain significant amounts of THC, the chemical in cannabis that makes users feel euphoric.

Sienna, 8, with her mum, Yvonne Cooper, who’s campaigning for urgent access to medicinal cannabis to help treat her daughter’s epilepsy

Is it legal?It’s now legal to prescribe MC here, but it’s not yet approved by the Therapeutic Goods Administration so distribution is still subject to federal, state and territory regulations.

What about supply?MC products are currently imported from overseas, so costs are high. MC cultivation is underway in Australia, which will

hopefully reduce costs, but the crops are unlikely to be ready until the end of 2017.

Who prescribes it?Doctors can apply to become a prescriber through the Special Access Scheme or Authorised Prescriber Scheme, but both have been criticised for being complex. A lack of education on MC is also making them reluctant.

Source: Pharmacognosist and educator Justin Sinclair of United in Compassion, which advocates for patient access to MC.

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