The family of a nine-year-old Toronto girl say a special form of medical marijuana is helping her cope with a rare genetic condition that causes severe seizures.

Ava Calandra, 9, was born two weeks late and weighed less than five pounds (2.25 kg). Her parents soon noticed she wasn’t eating properly and struggling to breathe.

“I called my husband at work and I said: ‘I’m taking Ava to SickKids Hospital and I’m not leaving until they tell me what’s wrong’ and thank goodness I did,” Antonella Calandra, Ava’s mother, told CTV Toronto.

After numerous tests, Ava was diagnosed with Wolf-Hirschhorn syndrome, a rare genetic disorder where patients are missing part of their fourth chromosome. As a result of the condition, Ava is non-verbal, eats through a feeding tube and has severe seizures. According to the U.S. National Institutes of Health, the condition affects about one in 50,000 births.

“You’ve just been told your child isn’t going to live the life that you had dreamt and imagined,” recalled J.P. Calandra, Ava’s father, referring to the moment when he heard of Ava’s condition.

J.P. says the longest seizure Ava experienced went on for an hour and 45 minutes.

The family says Ava’s quality of life has improved thanks to a form of medical marijuana. The medication has helped with the severity and frequency of Ava’s seizures and helps her sleep through the night.

Ava has been able to attend school five times a week, rides a specialized bike and is trying to walk.

“There have been such amazing milestones in Ava’s life,” Antonella said. “Her strength and resilience is incredible.”

The family is now hoping to help other families dealing with similar circumstances. They have started a charity called “Angels like Ava” designed to help other families with children who have rare genetic conditions.

“I think Ava makes everybody that comes in contact with her a better person,” said J.P. “To us she is an angel. She is as pure as it gets.”
Origina article at: https://www.ctvnews.ca/health/toronto-girl-with-rare-seizure-disorder-thriving-thanks-to-medical-marijuana-1.3758363