Baby Anaya

May 26, 2011 at 7:00 am Leave a comment

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 demyelination 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’s mother, Camara, keeps a detailed Blog about life with a Krabbe baby that many people find inspiring to read.

Over the past year since Anaya became ill 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. She requires special care and equipment, without which life would be uncomfortable for her. Help offset the costs of caring for Anaya by visiting the Donate Page. Sponsors who are helping Anaya are recognized on the Sponsors Page. Please take a moment to view who is making a difference in Anaya’s Life, and if you support these businesses, please mention to them that you appreciate the difference they are making in Anaya’s life.

Anaya is fed breastmilk from her mother and from Canadian milky moms who have donated their liquid gold to help her. If you are interested in why Anaya is fed breastmilk, or have milk you would like to donate, please see the Mama’s Milk Page.

Anaya and Camara are currently in Vancouver attending BC Children’s hospital, and hoping to get in to Canuck Place children’s hospice. This time of upheaval brings its own financial challenges, as does the prospect of heading home to Nelson and managing the expense of staying home with Anaya. Camara can not work, because Anaya needs care 24 hours a day. Her family thinks that it is important to have a comforting, loving presence with her at all times. Her mother typically cares for her 16 hours a day, while nursing staff support her for the other 8 hours.

Today, we are running a 1-day fundraiser, called “Saving Anaya Day”, and asking everyone to donate $10. We know times are tight for everyone, but if we can reach enough people, even this small amount can make a big difference to a very deserving family.

Please visit to donate. If you don’t have a Paypal account, you can use the same form to donate with a credit card. You can also send an email transfer to, or deposit directly into Anaya’s Royal Bank account: Anaya Cassin Potts, 03200-5004502 if either of those options is more convenient for you.

Thank you so much for taking the time to read about Anaya and Camara, and we hope you will put $10 of this week’s coffee fund towards this great cause!


Entry filed under: Uncategorized.

Don’t Bite Your Friends… Yes, I Schedule My Baby!

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