The above comment is our latest unsupportive remark. I have four small children here the oldest of which needs me now more than ever. I am breaking up with worry of what's going to happen to her. If we could get compassion and sensible medical exemption for this child she could have an opportunity to live her life. She is being denied this. She needs help and she needs the people in responsible position in this country to take action and find a solution now. I do not want to give up on Ava but I do not want this awful battle either please consider spreading the word about our daughter she needs the help of the Irish government. She needs it soon.