You may find that you will need specific pieces of equipment to help you care for your child or aids to help them to get the most out of life. You should be assessed by someone from your local health or social services department or children’s team who can inform you about the options available to you. This factsheet provides...
In October 2012 a Neurologist at Great Ormond Street Hospital gave my husband and I the worst imaginable news. Our youngest child Frank, aged 4, was diagnosed with Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition. Frank had been healthy and had developed as expected until the age of three and a half when he started having seizures. Batten disease...
