Today, just a bit more than an hour ago a family lost their little girl… A daughter, a sister…
My heart is breaking for them… I can’t even imagine…
Her name is Anaya and I first started to hear her story when buzz started on the Internet in search of milk donors not long after her diagnosis. I have been following her story ever since then.
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.
With the love of her family, the gift of mama milk from many candian moms and amazing care, Anaya lived for nearly 2 years and 3 months.
This is not the usual type of that I write but there is something about Anaya and her family that touched me and effected me so much. When I looked at her pictures, I saw my little girl in her. I felt a connection, I had her in my thoughts often especially when I was next my own little girl’s bedside.
So today I grieve with the family, and thank them for sharing her life with so many people.
To know more about Anaya’s life you can read her mom’s blog here…
Reminds me of the recent article in the NY Times about the Dragon mom (http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html). My heart goes out to Ananya’s family. At least the little girl is free from suffering.
how so so so terribly sad,so hard, and beautifull at the same time. i was crying so hard while reading her post. thank you for sharing it. For sure, i will not look at my little boy the same way tomorrow morning!