I am exhausted and ready to collapse after almost 9 years of a continuous sleep deprivation. At night my son is restless and seems distraught though his eyes are closed. He's tense, screaming, crying though when asked about pain - he replies there is none. I feel trapped - for him and with him - in this self propelling, self destructing micro universe of ours. I am angry, sad, helpless and so, so very tired. There is no help from any possible side. #LeschNyhanSyndrome