Written by Avery Haines for City News.
The mother of a child with a rare, life-threatening illness says nurses are refusing to administer the medicine that most effectively treats his seizures — all because of hospital politics surrounding children and medical marijuana.
Maria Niembro’s 11-year-old son, Francesco, has CFC Syndrome (Cardio-Facio-Cutaneous). “There are only 450 people like him in the world,” Niembro says. “I hit the lottery with him.”
That lottery though, is one no parent would ever wish to win. Francesco is non verbal, has severe developmental delays, is fed through a G-tube, and is plagued by life-threatening seizures.
Amidst the collection of pills, liquids and medications he takes every day, one small bottle has done more than any of them to reduce the seizures which he endures as many as 10 times a day.
It’s a legal medication, prescribed by a Toronto neurologist, but not one nurse will administer it.