Chloe’s Story
CHLOE´ STORY:
Chloe suffers a rare disease that is very rare, one of those diseases that nobody has heard of, that has no name and the little we do know is terrifying. Her disease is progressive, chronic and debilitating. She is slowly getting worse and nobody knows how to stop it.
A few months before Chloe turned 3 she began to sufre a sudden loss of motor función, she was falling constantly, drooling, having difficulty drinking and eating, her speech became slurred to the point that we couldn´t understand her. The doctors thought at first it was a brain tumor but after weeks of hospital and tests she was sent hom without any answers and we were all very afraid.
No doctor knew what was happening to her and we went from hospital to hospital, city to city, country to country, specialist to specialist and tried countless therapies. Our lives were a living hell. Chloe was incapacitase to the point that she didn’t play, laugh, walk or run and eating was a life risking endeavour. Her little legs were full of bruises from falling constantly. Powerless, she just looked at us and cried as the broken words fell from her mouth.
When the doctors stopped testing her saying that they would monitor her in semestral appointments I understood that if we didn´t find the answers ourselves then nobody would. Only by finding the cause of her disease could we really begin to have hope for treatment. Thats when my struggle “buscar para encontrar” (search to find) began.
