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Oh, Mamas.  It is with a very heavy heart that I write.  Some of you may remember Baby Anaya, who we profiled last April.  She had been diagnosed with Krabbe Leukodystrophy and wasn't expected to live past her 2nd birthday.  Her mother Camara was desperately looking for breastmilk donations.  I know many of you donated to Anaya's cause.  I know many of you shed tears for baby Anaya, for her mother and family, and many of you sent prayers of love and support their way.  So I know many of you will be as heartbroken as I to learn that little baby Anaya has passed.

Beautiful baby Anaya passed away, in her mother's arms, on November 13th.


In her blog, Camara writes:

I held my little love for hours while she was on life support.  I kissed her face, her fingers, her toes, her lips.  I wiped her tears from her eyes.  I couldn't stand forcing her to stay.  I wanted to set her free. The hardest part was waiting for everyone to get there.  When the family was united we made the decision unanimously.  We removed her bi pap mask.

She was so relieved she gave one of her "Thank you" sighs.  We each took turns holding her.  The mask came off at 12 noon.  We gave her a bath – her favorite thing!  Her sister read her a book.  I played with her hair.  Daddy played with her toes.  As her breathing became more laboured we knew the time was drawing near.  I lay down on the bed and placed her in her favorite spot over my heart.  There became long pauses in her breathing.  Then she would gasp a huge awful breath and let it out in a long sigh.

I love you mama
I did my best mama

I told her how proud I was of her.  How many lives she touched.  How many babies she is saving.  How many parents love their children even more because of her. I told her she needed to go.  To stop fighting and allow herself to be carried away by the light. I told her I was sorry I didn't get her to the sunshine.  I opened my heart as wide as I could and envisioned the sunshine of my soul enveloping her and keeping her warm.  She took her last deep breath and let out the most beautiful baby sigh I ever heard.  There was no pain in it. It was the sound of freedom, relief, joy.  It was the sound of my baby crossing the rainbow bridge.  Her heart stopped and she was gone.


There are no words, Mamas.  I can't imagine the strength it took to say goodbye.  There are times when I realize how much I don't understand.  This is one of those times. 

Camara, I am so grateful to you.  For taking us all along with you on this insanely difficult journey.  I certainly count myself as one of those parents who love their children even more because of baby Anaya.  Your words have inspired us, your pain has humbled us.

Camara finishes with, "Please give me the strength to carry on and do what I have to do."

Readers, let's do what we can.  Send Camara and her family your thoughts and prayers.  Leave a message of support on Camara's blog.  But most importantly, remember that life is so very short.  And that the vast majority of us are very, very, very lucky.  I find that it's impossible to lose perspective when thinking of baby Anaya and Camara's journey.  And for that I will be forever grateful.



ps.  If you'd like to do more to help, I believe Camara has something up her sleeve in regards to setting up a foundation to end Krabbe Leukodystrophy.  Follow their Facebook page for current information.


About Author

Shana founded The Mom Edit in 2008. She lives with the love of her life (his name's Mike) and their two crazy boys in downtown Philadelphia. She loves a good styling challenge (her engineering side shows eventually), appreciates kindness, and usually picks scotch over wine, sneakers over stilettos, and denim-underwear, always.

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  1. UPDATE: It looks like a small study has shown that Krabbe, if discovered before symptoms start (think tested at birth)…may be treatable. According to Camara’s facebook page, she’s setting up a foundation to push for Krabbe screening of newborns, as well as create a mobile care unit that would allow parents of Krabbe infants to take them on a much-needed vacation.

  2. I sat here reading this story with tears in my eyes. My seven year old son came over and gave me a hug and the tears really started to pour. This story is a remarkable one – remarkably heartbreaking, yet one filled with such a remarkable love.

  3. I was just thinking of this family the other day…thanks for letting us know. I cannot even begin to fathom such a thing. My heart goes out to them.

  4. Oh, Shana, this is truly heartbreaking, and so beautifully written. “. . . my baby crossing the rainbow bridge.” I have no words for how sad this makes me. I love you.

  5. My heart is broken for this family. I sit here tears rolling down my face, not even able to comprehend what they went through. I have a 2 year old myself and can’t begin to picture ever having to say goodbye. This is beautiful and this mother is strong. I am praying for this precious family.

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