- Posted January 20, 2014 by
Elk Grove, California
This iReport is part of an assignment:
Living with a rare disease?
Laila, our fragile little porcelain doll
My daughter Laila has an extremely rare genetic disease called Vanishing White Matter Leukodystrophy. This disease affects the myelin sheath, the insulation of the nerves in her brain. This sheath is "vanishing" which causes her to become paralyzed, blind, deaf and tragically lose her life. We have to protect her head like she's our fragile porcelain doll. Any head trauma or fever small or large could be fatal or cause serious brain damage. There is no cure or treatment for this disease and we struggle everyday to keep her happy and healthy but try and let her lead as much of a normal childhood as possible. Laila has a considerable amount of "brain damage" and from what her neurologist has told us " she is a miracle that she is doing as well as she is". There is little to nothing known about this disease in the general public and as a result there is not enough funding for research to discover a cure. Please share my angel girls story, give my baby a chance at life and so many other kids and families that are tormented by this awful disease.