Brothers have the same deadly disease but only 1 gets what their parents hope is life-saving treatment
· CBC News
Two young brothers, both with a deadly genetic disease, could face two very different futures because only one has access to cutting-edge medication.
Andre Larocque, 8, and his younger brother, Joshua, 6, have cystic fibrosis.
The relatively rare disease leads to the destruction of the lungs and an early death for most people who have it.
There is no cure. Once lung function is lost, there is no way to get it back.
“When I put them to bed at night, I hear Andre go to sleep peacefully and then I hear Josh laying awake in his bed coughing himself to sleep,” mother Sasha Haughian said during an interview from the family’s home in the small Ontario town of New Tecumseth.
“I don’t know how to describe the feeling of listening to that and knowing it’s just gonna get worse.”
Andre is on a medication called Symdeko through a drug trial, but Joshua wasn’t selected for the trial and has no access to two similar Health Canada-approved medications. That’s because the Ontario government doesn’t fund the drugs for the vast majority of cystic fibrosis patients and his parents can’t afford to pay out of pocket.