In loving memory of Anaya - Krabbe Leukodystrophy awareness
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Uploaded by TerachiShinya on Jan 21, 2012
| Video made with her mothers permission |
Krabbe Leukodystrophy is treatable 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.
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.
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.
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soo sad!:( RIP Anaya <3
sharon1110rakker 1 month ago
I watched this on my phone earlier, you made this so beautiful Noora! Just so precious and peaceful! May she rest in gods hands <3
HeartWarriors 1 month ago
i've never heard of this deceased before... such a beautiful child, such a shame and so unfair.
May Anaya Rest In Peace <3
sarofan 1 month ago
so sad :( RIP Anaya x
Kittiesrkool 1 month ago
Beautiful video<3 Rest in peace Anaya
biebercena916 1 month ago