Victoria toddler one step closer to getting life-saving drug
Posted June 26, 2019 11:47 pm.
Last Updated June 27, 2019 5:27 am.
VICTORIA (NEWS 1130) — A Victoria family fighting for the life of their three year old is one step closer to the toddler getting the life-saving treatment she needs.
The medication was just recently approved by the province for the little girl’s very rare disease just weeks ago.
RELATED: Province to cover cost of three-year-old girl’s treatment
Jori Fales says it will take a couple weeks for Charleigh to heal around a medication port just inserted in her brain. After that, she will get the first of what will be a lifetime of infusions for her that will keep her alive, and regression at bay.
“You know there’s a lot of anger that we are having to do this – all this but we are grateful for this medication and for this chance to keep her alive, keep her going in the hopes that one day a cure will really help her,” she says.
Without the drug, Charleigh — who turns four on Tuesday and has already lost the ability to say I love you — would lose all of her facilities in the few years she would live.
