Batten Disease expert baffled by BC's decision to cut funding to nine year old Charleigh Pollock for her life-sustaining medication, Brineura ...

Charleigh Pollock, 9, is being treated for a terminal neurological disorder known as Batten disease with twice-monthly ...

While most parents of kindergartners are worried about their kids learning to read and playing well with others, Bryan and Beth Fugere of Shakopee are worried about enrolling not just one, but two ...

The mother of a terminally ill 11-year-old has spoken of her heartbreak at knowing her daughter may not live past her teens. Anna Lowri Roberts, from Sarn Mellteyrn, in Gwynedd, was diagnosed with ...

The exact number of kids with Batten disease remains unknown; however, some researchers have estimated it affects around three out of every 100,000 children in the U.S. Two of Tracy VanHoutan's ...

Charleigh's mom says she is hopeful but "very cautious" after hearing B.C.'s Ministry of Health will review the funding of a ...

The province's decision to withdraw funding for a terminally ill Langford girl’s life-sustaining treatment is under 'urgent ...

A Langford mom says she feels “blindsided” by the province’s decision to end funding for her terminally ill daughter’s life-sustaining treatment. For over five years, nine-year-old Charleigh – who ...

The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail.

Anna Roberts, 11, is one of just 39 people in the UK with the CLN3 strain of Batten Disease. Helen Gardner was bleeding and submerged in the water until two 14-year-old boys heard her cries. Cases ...

Anna Lowri Roberts is one of 39 people in the UK with CLN3 Batten Disease The mother of a terminally ill 11-year-old has spoken of her heartbreak at knowing her daughter may not live past her teens.