- Baby Luella suffers from a very rare type of epilepsy called West syndrome
- The 10-month-old has hundreds of seizures a day, impacting her development
- Doctors were wanting to remove half her brain to give her a better quality of life
- Her parents have turned to cannabis oil to help and have seen drastic changes
The parents of a baby girl who suffers with horrendous seizures every day claim cannabis oil is saving her life.
Baby Luella has a rare type of epilepsy called West syndrome, meaning the 10-month-old has hundreds of tiny seizures a day.
Her mother Erin Oudshoorn described it as a living death sentence.
Babies with the disorder often lose basic skills such as sitting, rolling over, or babbling.
Luella’s seizures were so bad doctors were preparing to remove half her brain.
But that plan was put old hold after her parents Erin and David Oudshoorn turned to cannabis oil help.
The couple were left stunned at her drastic, overnight improvement.
Baby Luella (centre with her parents Erin and Dave Oudshoorn) who suffers with horrendous seizures has seen her condition improve after using cannabis oilParents hail baby’s response to cannabis oil treatment as ‘amazing’
‘Life poured back into her. Pure, uninhibited joy flourishing through my home, through my family,’ Ms Oudshoorn said.
Before using the oil baby Luella was unable to hold her head up. She was enduring hundreds of seizures daily.
She is now far more alert, she can hold her head up and she can enjoy tummy time again.
‘She knows who Dave and I are, eyes following us around the room, she squeals in delight and that little smile is back. It’s just heaven,’ Ms Oudshoorn said.
‘It’s just remarkable.’
Luella was diagnosed when she was just 11 weeks old. Her parents have tried dozens of anti-epileptic treatments but none seemed to work.
Ms Oudshoorn said other than ACTH steroid injection, which can’t be used long term, no other anti-epileptic treatment has given her these kinds of results.
And while Luella is still experiencing spasms, they are no where near as bad as they were, Ms Oudshoorn said.
CBDa, or cannabidiolic acid, comes from a hemp plant and does not include the psychoactive part of the plant that creates a ‘high’.
Medical cannabis is often prescribed for seizure management, epilepsy and psychological conditions.
Other than ACTH steroid injection, which can’t be used long term, no other anti-epileptic treatment has given her these kinds of results
The product is legal in Australia but it is only granted to certain patients under the Special Access Scheme, which is managed by the Therapeutic Goods Administration.
Accessing the medicine through legal channels can be difficult and costly.
Epilepsy patients spend an average of $992 a month on treatment while those with chronic pain spend an $353 per month, according to Cannabis Access Clinics.
Mr and Ms Oudshoorn did countless hours of research and found CBDa was the best treatment for their daughter.
They struggled to import the oil from overseas at first due to the COVID-19 pandemic but have now secured a supplier who they hope to work with long term.
The NSW government has created a farm which will produce the first-ever cannabis crop for a new local industry.
Agriculture Minister Adam Marshall told 7news it’s about ‘creating the McDonald’s of the medicinal cannabis world’.
However, doctors remain cautious about prescribing the product and have called for more high-quality research into the safety and effectiveness of it.
But for Luella’s parents, they are prepared to take the risk if it means helping out their baby.
‘When you’re in our shoes and none of the medicines are working you’ll do anything to stop the suffering of your child, absolutely anything,’ Ms Oudshoorn said.
The ACT is the only state in Australia to legalise the recreational use of cannabis, having passed a bill in September last year.
In Canberra, people can possess up to 50 grams of dried cannabis, 150 grams of fresh cannabis, grow two cannabis plants per person and use cannabis at home.
What is West Syndrome?
West Syndrome or Infantile spasms are a very specific type of seizure with a characteristic age of onset.
Symptoms of the syndrome appear between 3 and 12 months of age.
There is no cure for West syndrome, so unfortunately, the only treatment is to reduce symptoms.