The Anaya Initiative

4.4.11

I received an email today from a woman named Katie Edwards who wrote to ask me if I would post something here about her friend Camara's struggle to care for her terminally ill baby Anaya and how Canadian moms can help.  It seems obvious from what I've now learned that Camara is a force of nature. Anaya is lucky to have her in her corner.  


Camara and Anaya, 2010


Anaya is terminally ill with Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. 

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's condition makes it impossible for her to tolerate or process food or formula, so Camara is asking for donations of breast milk to help her feed her daughter.  If you, or someone you know can help with a donation, please follow the links below to learn more.  


Watch a CBC news piece, A Mother's Plea, here.
Join The Anaya Initiative Facebook Group, here.
The family's blog, Healing Anaya, here.

2 comments :

  1. Poor little darling. Her mother is a true warrior.

    ReplyDelete
  2. My cousin recommended this blog and she was totally right keep up the fantastic work!

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