I was alerted to the plight of a little girl named Anaya, who has something called Krabbe Leukodystrophy, and needs breastmilk to stay alive. It seems that, because of the breastmilk, she has already exceeded her life expectancy.
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 nasogastric tube and is now seemingly blind. She struggles mostly with excessive mucous production in her throat which sometimes blocks her airway.
If you’re in Canada – it seems customs won’t allow breastmilk across the border – and you can donate milk, please do so. If you’re not, please repost in the hopes that others can help. In any case, please consider a monetary donation. The money goes to purchase breast pumps to loan out as well as trips to see the specialist.
You can learn more about Anaya at her mother’s blog here or email her mother (maraglow @ gmail.com).