In loving memory of Anaya - Krabbe Leukodystrophy awareness

Anaya Cassin Potts
August 2009 - November 2011

Baby Anaya was diagnosed with Infantile Krabbe Leukodystrophy in May 2010.
She first started showing symptoms in February of 2010 at the age of 4 months.
This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.

The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and average life expectancy is less than 2 years.

Anaya gained some skills and lost them. She was fed through a G- tube and lost her sight. She struggles mostly with excessive mucous production in her throat which sometimes blocks her airway.

Little Anaya gained her angel wings on November 13, 2011.

Krabbe Leukodystrophy is treatable with stem cell transplant if it is tested for at birth.
Be sure to ask for supplemental newborn screening for new babies.
Anaya could have been saved, had she been tested.

Rest in peace Anaya  ♥