US EditionBatten Disease expert baffled by decision to cut Brineura funding
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Batten Disease expert baffled by decision to cut Brineura funding
A Vancouver Island family continues to fight for their daughter’s life-sustaining medication, Brineura. And each birthday that Charleigh Pollock gets to celebrate is a special one. “Happy birthday to you! Happy birthday dear Charleigh, happy birthday to you,” sing Charleigh’s family, as they strive to make each moment special. The nine-year-old was diagnosed with CL2 Batten Disease in 2019, a rare, fatal and neurological disorder. The only known…
·Victoria, Canada
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