hospital in sheffield. sma itself is actually the most common genetic condition that causes infant deaths and severe disability — worldwide. about 90% of children with sma type one would die by age two. so this treatment would drastically change the disease progression and outcome of each patient. you don't know what's around the corner. there's only five years' worth of data. so, from what i've seen from other children, theyjust get stronger. so the world really is his oyster. thank you, guys. edward has no idea he has just received the most expensive drug in the world, or how his life will now be transformed. but his parents feel he finally has a future. debbie tubby, bbc look east. sailing was one of the sports that team gb excelled at in this month's olympics, and today children from deprived communities in birmingham have been given the chance to have a go themselves.