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.
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