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A girl with a deadly brain disease has been given a unique drug that was invented from scratch just for her and in a fraction of the normal time. Mila Makovec, now aged eight, was diagnosed with fatal and untreatable Batten disease. In less than a year, doctors at Boston Children’s Hospital in the US […]
Families of children with a rare degenerative disease have won their fight for funding for NHS treatment. The four children, from Newcastle and Cheshire, have Batten disease, which is incurable and causes seizures, visual impairment and mobility loss. NHS England confirmed a “deal had been struck” to fund a drug which the families say slows […]