I received the most heart-breaking email from a reader on Monday. Katie wrote to us on behalf of her friend Camara. Camara is the mother of 18 month old Anaya who is terminally ill with Krabbe Leukodystrophy. Krabbe Leukodystrophy is a rare disease that, due to a lack of a specific enzyme, causes demyelination in the brain. 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.
Beautiful baby Anaya is now blind. In her blog called Healing Anaya, Camera writes:
She's been needing oxygen almost 24 hours a day. I was hoping that she would not need it after recovering from her recent illness, but she does. This makes me wonder about her brain function. Is the demylination spreading more into her brain stem? Is she drawing closer to the end of her journey? How many breaths do we have left? I take her in my arms and kiss her cheeks, reveling in the incredible softness found only there. How can I memorize the feeling? Touching her hand, I feel her chubby little fingers close around mine, and she sighs contentedly.
Can you imagine counting downs the months, the days? It's unthinkable. My heart breaks each time I see how tall Raines has grown, or when I see Pax holding up his head for the first time. These milestones bring my boys one step closer to that point when they will no longer be mine. But my boys, in all likelihood, have a future. They may not always be mine in that intense mom-baby bond kind of way…but their cheeks will always be there for kissing, whether it's soft baby cheeks or a scratchy man's face. But what if that wasn't the case? What would you do?
The battle that Camera is fighting makes my head spin. I want to throw myself to the ground and sob. Imagining, for a second, myself in her place leaves me with a desperation so wild that it scares me. Counting the days. Memorizing baby Anaya's face, the feeling of her chubby little fingers. Can you imagine? Camera is fighting for a miracle.
One of the many, many things Camera has been doing to help keep Anaya both alive and comfortable is feeding her breastmilk (she's intolerant to formula). Additionally, a 2008 study found the "presence of putative stem-like cells in human milk". In other words, stem cells. While there is no research yet that directly links breastmilk to curing a disease like Krabbe's….Camera is hoping for a miracle. Wouldn't you?
Readers, there are a few ways we can help:
1. Canadian readers: Camera is looking for breastmilk donations (espeicially colostrum). Purolator Canada is shipping all breastmilk donations for free. To donate, go to The Anaya Initiative for more information.
2. All other readers: Sadly, shipping breastmilk through customs is a no-go. However, we can donate money to help with the cost of Anaya's care. Even $10 can help.
Camera, you and baby Anaya will be in our thoughts and prayers.
xo,
S
