Australian family battles daughter’s brain disorder, hopes cannabis will one day help

Imagine being trapped in a body where your brain activity is so disturbed and unpredictable that you seizure for several minutes at a time, in several different ways, for several episodes a day.

As the physical and mental stress take its toll, heavy medication is your final resort to cope, so your body shuts down in an exhausted heap, only for your brain to continue enduring sporadic spasms while your body desperately tries to regain its much-needed strength.

Amalie and her devoted parents Renae and Frank. image www.druglinks.info

Amalie and her devoted parents Renae and Frank. 

This nightmare is a tumultuous reality for four-year-old Perth girl Amalie Telo, who was born with the rare brain malformation disorder lissencephaly, literally translating to “smooth brain”.

This life-limiting condition has caused Amalie to have epilepsy, global development delays, cortical visual impairment and feeding difficulties, amongst other issues. She requires constant support from medical teams, allied health care, and most importantly, her devoted parents Renae and Frank.

Amalie's family hopes medicinal cannabis may offer some kind of relief-image www.druglinks.info

It is highly unlikely she will ever be able to walk, speak, feed herself or independently care for herself for the remainder of her life. “Infantile spasms”, a particular type of seizure that Amalie experiences, have resulted in regression of some of the few skills she has learnt. Medicinal cannabis may be her only foreseeable option to improve her quality of daily life.

“From day one of diagnosis she was put on an anti-epileptic medication and she has been on that one the entire time, but with dosage changes, different combinations, meds being added and taken away,” Renae says.

“For a little period she was seizure-free but then developed them again.”

Amalie experiences countless seizures each day of varying degrees. Renae suspects some are minor enough to go unnoticed, however others are so severe they require emergency drugs that knock her out for several hours at a time.

Amalie experiences countless seizures each day of varying degree-image www.druglinks.info

Amalie experiences countless seizures each day of varying degree

“It could be a 15-second drop seizure where she loses muscle tone and her head will fall and her limbs will drop, she might have short moments of eyes flickering. They can last anywhere from 15 to 20 minutes,” Renae explains.

“Anything longer than a five-minute seizure, we have to give her what we call ‘rescue medication’ to help bring her out of the seizure. They’re like a sedative so they slow everything down. She’s non-mobile and non-verbal, so I have no idea how it affects her.”

Perth mother Kylie* administers an oral capsule form of medicinal cannabis to her four-year-old son Joseph* who suffers from Dravet Syndrome, an extreme form of epilepsy. Prior to using this therapy he was having major seizures at least once every 10 days.

“When he seizes he goes into what they call a status seizure, which is anything over 20 minutes,” she explains.

“The last seizure he had, he seized for seven hours. They have a whole protocol of drugs that they go through, but they ended up having to put him in a coma and put him in ICU on a ventilator to try to stop it.

“The first time he used medicinal marijuana he was 18 months old and went six months seizure-free. He started talking in sentences, and he started going from a fairly unsteady walk into a strong walk, and then started running.”

Kylie says the drug needs to be regulated so its effectiveness can be accurately assessed.

“His quality of life has gotten a lot better, his communication has gotten better, he’s able to tolerate things a lot more,” she says.

“But it needs to be legalised so we know its consistency, so it’s a pure drug, so we know there aren’t any other chemicals in there and know it was processed the right way. It would take the fear out of that and it would take the fear out of getting in trouble about it.”

Chief executive officer of the Epilepsy Association of WA, Suresh Rajan, says of the 24,500 West Australians with epilepsy, some 7500 have an uncontrolled type. He estimates 10 per cent of those illegally use marijuana in some form.

“Anecdotally, I have people who have gone from 300 seizures a day down to 200 or 300 days seizure free,” Mr Rajan says.

“This is significant improvement.”

Legislation allowing for medicinal cannabis in Australia was passed through Federal Parliament in February 2016. Under the new scheme, patients with a valid medical prescription can possess and use marijuana products manufactured from marijuana legally grown in Australia, provided the supply has been authorised under the Therapeutic Goods Act and relevant state laws.

The next step is conducting clinical trials to determine which of the 48 different types of epilepsy it affects, which of the patent medications it can replace and what side effects can occur.

According to Amalie’s neurologist, she should take part in a trial when one comes to Perth.

“We’d love for it to happen,” Renae says.

“It all depends on when it comes on board. We’ve been waiting for quite some time and trialling different medications and dosages, which have had no effect on the number of seizures or the length of seizures that she’s having.

“Some of them can have extreme side effects like deadly rash, swelling of the face and lips, muscle weakness, kidney and liver disease, bone volume reduction, behavioural issues, and depression and suicidal thoughts. Those worry me because she can’t tell me how she’s feeling.”

Renae says the benefits of medical marijuana could be life changing for Amalie and her family.

“It would be so much better. It would probably affect her sleep patterns, which in turn would mean I get a good night’s sleep,” she said.

“Since she was born I haven’t had a full nights sleep – I’m constantly watching her on a video monitor and listening out for noises.

“We’re not oblivious to the fact that medical marijuana may not be the answer, but if it does it would open up a whole new world of different possibilities for her so it’s important to try. There aren’t many options left. We know it’s not going to happen any time soon, but the sooner the better. As long as it’s moving forwards.”

To follow Amalie’s journey visit https://www.facebook.com/AmalieTelo/

*Names have been changed for anonymity.

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Henry Sapiecha

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