Posted by Michael Wonder on 04 Apr 2019
Ontario woman with rare disease forced to pay hundreds of thousands to cover ‘miracle drug’
3 April 2019 - For 21 years, a Whitby woman and her family have been in and out of hospitals, fundraising and hoping for a breakthrough that would help her in her fight against a rare disease.
The road has been long and it’s been exhausting for Tori Lacey, who suffers from Spinal Muscular Atrophy (SMA) Type 2, but finally the miracle is here in the form of a drug called Spinraza.
“It’s frustrating because I’m in university and I’m trying to focus on my studies, I’m trying to focus on my career, and this is not something I have time and energy to fight for,” Tori said. “It [the drug] would mean that I would be able to plan my future, I would just have a sense of knowing what’s going to happen in my future, because I know I that won’t get any weaker.”
