This is my daughter Kelli she is the toughest person I have ever met and she never loses her positive outlook. She never stops repeating, "Remember to make today a beautiful memory for tomorrow."  This picture of Kelli is just that a memory, as her illness has made her look like a caricature of herself. Kelli has vEhlers-Danlos Syndrom, Osteogenesis Imperctia and Tarlov cysts on her back so numerous that her doctor was unable to count them. It is the Tarlov cysts that have caused her to be unable to sit up or walk. Kelli is bedbound , her condition prevents her from being able to sit up beyond 90 degrees, or walk at all, she is unable to push a manual wheelchair. Kelli is trapped in a 20 x20 room. She sometimes says that she feels like she is in prison and is unaware of her crime.
 What we need is an electric chair ( Like the Invacare® TDX®SP, TDX SR Power Tilt, Recline, & Leg Lift Power Wheelchair that reclines, raises and lowers) and if possable a van with a power lift to give her some mobility.
Kelli is an amazing woman with a strong will and a kind heart for anyone she meets. Kelli wanted to be on Broadway her entire life, but due to her many illness she was  able  too, that however did not keep her from living life to it's fullest, except for the last 4years. Kelli spent 2 of those in an active state of dying from the TIC line infections from the high doses of pain medication  that her hospice ordered,  we left that Hospice  in the summer of 2013 and the new hospice is helping her to live again but  she has been bed bound for 2 years and will never walk again.  Kelli is in Hospice  for pain relief  and end stage vEDS/OI but should live many more years.
  Kelli has had nothing short of a miracle. She is alert, coherent and articulate (she was the opposite of all this less than  17 months ago) so much so that she is wondering why she is a prisoner in her own room. Vitas is doing such an amazing job that Kelli is "Living" not dying and not even close to it. God has Blessed us with a miracle but that miracle is bitter sweet if Kelli is unable to move about freely.
Now that her pain is controled it is torture to watch her trapped in that bed day after day.  Kelli never complains but she dreams and hopes of seeing the Sun Rise, Christmas Lights, Shopping and Starbucks.