Health and Me on MSN1mon
What Is Batten Disease? All About The Fatal Genetic Conditions Causing Waste Build Up In Kids Brain
A life-saving medicine for children with Batten disease, a rare and fatal genetic disorder, is set to be pulled from the ...
‘This is our child’s life’: B.C. family gets small extension for crucial drug funding
A temporary reprieve for a Vancouver Island family after their terminally-ill daughter will continue to have access to ...
Drug treatment extended for Langford girl with rare fatal condition
The family of nine-year-old Charleigh Pollock will continue to be covered for the drug, which costs $1 million a year, until ...
Family calls for long-term access to 'miracle' drug
The father of a nine-year-old girl with a rare disease likened to childhood dementia has called for health bosses to prolong access to a "miraculous" treatment. Addy Clarke, from Swindon, was four ...
People5y
Texas Boy Raises $1.2 million to Help Save His Sister's Life as She Fights Rare Fatal Disease
"She's brave and she never gives up — that inspires me to do it myself," Garland Benson tells PEOPLE of his sister Christiane, who suffers from Batten disease Wendy Grossman Kantor is an award ...
The Reporter12y
Vacaville brothers Zack and Jakob Sharp to take…
The two boys will be participating in the 5K along with their cousins, Korry Sharp, 19, and Rachael, 16, who both have Finnish Late Infantile Batten Disease. For the boys, it”s a chance to spend ...
Revelstoke Review5d
B.C. resets clock on countdown to end terminal Island girl's drug funding
Provincial funding of 9-year-old Charleigh Pollock's life-sustaining treatment has been extended by 3 months until the end of ...
BBC1mon
Parents' fears over loss of Batten disease drug
CLN2 Batten disease is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. Phoebe, from Coventry, said daughter Flory's doses of Brineura ...