Thank you for taking your time to read our story. In 2004 my young grandmother's health deteriorated which puzzled all medical staff to a point one doctor finally told her that her heart was failing after losing her daughter and she will die. Lucky for us, on her next visit to the local hospital, a consultant referred her to a specialist out of town. This was our saviour. They diagnosed her with pha, little did we know that with this they handed her with a life sentence also. She regularly attended hospital out of town, agreed to them 'testing' new treatments&medications on her, due to these not being tested in the UK. She very quickly went from being the strongest, most independant woman i have ever met, to a frail, thin, grey old woman.Unable to leave home without oxygen machine, unable to go on vacation due to needing 24/7 oxygen intake, ensuring her medication was done every three hours to the min with a unknown medication to finally being bed-ridden with a hickman like attached to her chest with myself administering a mixture of controlled drugs to a specific limit into a syringe and attaching to her, again at the same time daily, to the min, failing this she would have died immediately. Due to her losing a substancial amount of weight, not to mention her independance and dignity, my grandfather, our knight in shining armour, would carry her to the toilet and back, cook her meals, take her drinks, give her oral medication like clockwork, she unfortunately suffered two strokes, obviously this did not do this un-common disease any favours! During her time in the local hospital, due to the nursing staff, doctors and consultants having no knowledge what-so-ever of her illness and medication, the failed to realise how life threatening not administering her medication on time actually was. The days she spent in hospital have to be the worse days i have ever experienced, fear, dread, sleepless nights, jumping every time the telephone rang, me being the rock for my grandfather and children. Finally her body could not take anymore of the pain. She passed away at home in her bedroom as she wished at 15:20 - 30/07/2014. She told me herself she was too tired to live anymore, she didnt want to suffer anymore, didnt want to be in anymore pain, she wanted to be with her daughter, my mother, our best friend. To say her last breath took my heart would be an under-statement. That very moment i lost my bestfriend, my grandmother, my rock, my one and only. I watched my grandad shatter into small pieces. She did out-live the life expectancy by far thanks to the medical staff out of town and the medication, but this also changed her as a person and we watched her die a small bit day by day. After experiencing pha first hand, i would not wish for anyone else to experience what we did. The reason why i have started this page is to help pha raise the money to provide the relevant knowledge, education, resources, most of all, the medication. Again, now knowing a very small vial which i administered 7 of each syringe daily charged £1000 each one. Thank-you for taking your time to read my story.