Tragic Setback for a Brave Little Fighter

In a heartbreaking turn of events, the medication funding for Langford's young warrior, Charleigh Pollock, will not be reinstated. British Columbia’s Health Minister, Josie Osborne, confirmed that the latest appeal was considered but ultimately dismissed.

Desperate Appeals Fall on Deaf Ears

On July 4, Charleigh’s mother, Jori Fales, along with leading experts on Batten disease, met with Minister Osborne to present crucial information they believed may not have been fully evaluated by the province's Expensive Drugs for Rare Diseases (EDRD) committee. This committee plays a vital role in assessing whether costly medications can be funded for extremely rare diseases affecting fewer than 1.65 individuals per 100,000.

A Confirmation of Disappointment

Despite the family’s hopes, Minister Osborne announced that all relevant evidence had already been assessed by the panel, leaving Charleigh without the necessary medication that has been pivotal in her fight against Batten disease. "In Charleigh’s case, we can confirm that all relevant evidence was considered," said Osborne.

The Pain of Communication

Fales expressed anguish over the way the final decision was communicated, receiving the news in an email just moments before it went public. "How can I look into Charleigh's eyes after this? I feel like I've let her down," she revealed, her heart heavy with despair.

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