About Anaya

March 2010 - Still smiling and seeing.

Baby Anaya was diagnosed in May 2010 with Infantile Krabbe Leukodystrophy. 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.

Over the past year since Anaya's birth she gained some skills and lost them. She is fed through a G- tube and is now  blind. She struggles mostly with excessive mucous production in her throat which sometimes blocks her airway.

Anaya is fed breastmilk from her mother and from Canadian milky moms who have donated their liquid gold to help her.

This blog is kept by her mother, Camara, who uses this blog as a method of communication with concerned friends and family members, and also as a means of self expression in this difficult time. Sometimes the posts are informative, sometimes they are emotional. It all depends on where Camara is at with Anaya on that specific day.

We love to get your comments. Please let us know you are reading!

November 2010 - Unsmiling, unseeing and still beautiful!