GoFundMe launched to cover drug costs for Langford child with rare disease

The family of Charleigh Pollock have launched a fundraiser to pay for their child’s expensive and life-extending drug treatments since they have been cut off by the BC government. 

Charleigh is a 10-year-old girl from Langford, who has been living with CLN2 Batten disease since birth. This disease is an extremely rare, degenerative neurological disorder that impacts only around 0.15 to 9.0 children per 100,000 births. 

Charleigh is the only child in all of BC who has CLN2.

Currently, there is no cure to CLN2, but with the drug cerliponase alfa (Brineura), children with the disease are offered a lifeline, and often live into adolescence. 

In the case of Charleigh, her mother says that the drug has been extremely effective.

“We’ve gone from almost a hundred seizures a day down to none,” said Jori Fales, Charleigh’s mom. “We see the improved quality of life, we see how much this drug has slowed her disease progression.”

“This isn’t just a drug—it’s her lifeline…her only defense against this disease.”

Following the Province cutting off Charliegh from funding for Brineura, BC Minister of Health Josie Osborne said that clinical evidence shows that once a patient passes a threshold of decline in their motor and language skills, Brineura no longer works to slow the progression of Batten Disease. 

However, Charliegh’s family and medical team assert that it would continue to expand and improve her quality of life. 

Fales says that the medication needs to be administered every two weeks, or else her daughter’s condition will rapidly deteriorate, leaving the family to fend for themselves and launch this fundraiser. 

“This GoFundMe has been created to cover the cost of Charleigh’s biweekly treatments that she desperately needs to keep her alive and have quality of life,” wrote Fales in the fundraiser.

“Your donation will go directly towards giving Charleigh a fighting chance, paying for Brineura infusions and end of life care in the future.”

Currently the GoFundMe has reached over $15,000 in just under 15 hours, with a goal of raising $500,000.