This article doesn't make easy reading, but highlights the need to encourage research into medicine that may help. Thank-you if you have already signed the petition to make Translarna available, please consider asking others to and share this on Facebook etc. http://www.irishtimes.com/life-and-style/people/our-children-were-going-to-die-and-there-was-nothing-we-could-do-about-it-1.2997074