Mia Wilkinson
Mia Wilkinson was having up to 100 seizures a day before she was prescribed medical marijuana(GoFundMe)

The mother of an eight-year-old girl who suffers from a debilitating epilepsy syndrome has spoken of how medical marijuana has helped dramatically cut down her seizures.

Sarah Wilkinson, from Calgary in Canada, described how "absolutely terrifying" it was to witness her daughter Mia suffer her first seizure just 29 minutes after she was born.

Doctors said Mia was born with an extremely rare and terminal form of epilepsy known as Ohtahara syndrome. Symptoms include seizures and spasms which occur in the first few days of life.

The mortality rate is very high, with many children diagnosed with the condition dying within the first few years.  Ivan Cameron, prime minister David Cameron's son, died in 2009 aged six having been born with the condition as well as Cerebral Palsy.

Wilkinson said she was "thrust into the world of seizure disorders" following the birth of Mia, with her daughter suffering as many as 100 seizures a day.

After one serious seizure left Mia in a medically-induced coma, Wilkinson said how they felt it was "cruel" to keep resuscitating her in this way after no other medical treatment helped control the seizures.

Wilkinson said Mia showed huge improvements with the number of seizures she suffered after they took the decision to treat her with medical marijuana.

After taking the medical marijuana, Mia's seizures reduced from around 100 seizures a day to just seven over a period of eight months.

"Within 24 hours her seizures stopped," Wilkinson told Toronto Sun. She added after doctors took an electroencephalography [EEG] test – used to diagnose epilepsy – on Mia, the results showed her brain was comparable to someone with a benign form of epilepsy.

Wilkinson said how she previously wasn't sure of the benefits of medical marijuana, but decided to proceed with the treatment after exhausting all the other options.

"There was no way a doctor will prescribe medical marijuana for a paediatric patient, but we were ready to sign a 'no resuscitation' order and speak with a palliative team," said Wilkinson.

"So I asked, because it was all that was left. The doctor said, 'We are at the end of our pharmaceutical rope. Let's do it.'"

Mia doesn't smoke the medical marijuana, but instead it is cooked to extract the medicinal agents and then mixed with coconut oil, a concoction that Mia then swallows.

Doctors now want to find out which one of the compounds found in marijuana is helping Mia with her seizures, but that would require an expensive DNA test.

Wilkinson set up a GoFundMe page to help raise donations to fund for the genetic test. Public funding is not available as Mia was diagnosed terminal at birth.

"Until recently we were left without hope," Wilkinson said on the fundraising page.

She added: "Until the induction of medicinal cannabis, she went from, conservatively 50-100 seizures a day to just 7 in 8 months. We need to find out why.

"It won't change the course of treatment for Mia, but it can for hundreds of other children suffering from intractable seizure disorders."