Emily’s illness is similar to Alzheimer’s but in children. Sanfilippo syndrome is progressive and mainly affects the brain and spinal cord. Emily, 11, was once typical then stopped gaining skills and began to decline. She is no longer verbal and has gone from being fully potty trained to using diapers. She cannot feed or dress herself. She is considered to be around 9 months neurologically. Soon Emily will lose the ability to walk, eat, and swallow, and will end up on a feeding tube and spending her days in a chair or bed unable to move or communicate.
Emily’s life will end either before, or in her very early teens. There are absolutely no treatments for Sanfilippo syndrome, and that means no cure. Emily enjoys watching iCarly, Drake and Josh, and SpongeBob; going for walks; and visiting with others.
