The story of Kristi
” Sometimes I see 2 of Daddy “, Maggie said at the age of 9. 3 days later we were told she had 6-12 mths. to live. This after undergoing 3 years of fertility treatments just to have a child. She was amazing and survived 13 months. Diffuse Intrinsic Pontine Glioma….a monster brain tumor that allows children and recently older young adults to go deaf and blind before their loved ones eyes, all the while knowing exactly what is happening to them and knowing they are powerless over the situation as there is currently no cure. She had one of the first ipads with an app where she could push words as she could not speak. Her last sentence to us was, ” I am becoming Helen Keller “. It has been almost 5 years since her death. Our lives are forever changed. Every day is a struggle as the pain of losing her is excruciating still.