When I was pregnant, I told everyone that I would not post pictures of Adahlia to the internet (including Facebook), nor allow anyone else to do so.  I still believe in that decision.  After all, Adahlia’s life is her own, and I deeply respect her rights as her own person.  Children are not tools for adult vanity.  If she did not have this rare blood disorder, there wouldn’t be a single picture of her on the internet.

But I could not have imagined that we would be in the Pediatric ER and ICU six weeks after Adahlia’s birth.  I could not have guessed that she would be diagnosed with an extremely rare blood disease.  I always knew I was carrying a special child.  I just did not know how special.

I believe that we are all here to grow, and in our growing and evolution of self, we help other people to grow and transform, too.

Adahlia’s father and I have always been rather private, quiet people.  But, Adahlia’s story is extraordinary.  And the toll it takes on the family is extraordinary.  And so, nearly 9 months after birth, I decided to make our story public, to reach out, post her pictures, and solicit prayer and help.  Until I have any reason to suspect that she would not appreciate this website, I will leave it online.  But deciding it was not an easy decision to make.

And I will admit that it was still somewhat selfish to post pictures of my child to the internet.  It did make me feel better to say, “Look at this child!  Do you see this infant?  Look, she is still here.  Look! She is so sick, but she is smiling.  LOOK, she is still alive.”

Can you understand that?  The need to shout of someone’s existence before it blows away in the wind?  Oh, how my days were full of tears during that first year.

But that is only a very small part of the much larger reason that I have created this website.  By sharing her story and pictures, I hope to help people connect to her.  I hope to allow her to create a positive impact in a world still strange and unknown to her.  Maybe this site will give strength to other parents who have gone, or are going, or will go through what we are going through.  Maybe it will help bring awareness to DBA and inspire researchers and others to work harder to find a cure for these beautiful little beings.  And maybe it will help people in ways I cannot imagine.

Blessings and peace.


Gallery II:  Adahlia’s First Birthday

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Gallery I:  Birth to One Year

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