Imago Dei Photography » Oregon Coast Wedding Photography based in Tillamook Oregon

Rare Disease Awareness Day

Rare Disease Awareness Day, Axenfeld Riegers Syndrome, ARS, Axenfeld and Rieger anomaly, Axenfeld anomaly, Axenfeld syndrome,  AXRA, AXRS, Rieger anomaly, Rieger syndromeToday is Rare Disease Awareness Day. I hate that word- disease. Our sweet girl suffers from a genetic mutation. A rare condition by the name of Axenfeld Rieger Syndrome- what you may hear me refer to as ARS. To explain in plain terms; when she was formed in my womb there was a gene mutation. This mutation has caused havoc in her body leaving her with health risks and birth malformations. ARS affects, among other things, her teeth, jaw, eyes, facial structures, and overall development.

The chance of a child having ARS is said to be one in a million. Naomi is our precious one in a million. Our treasure. Although this illness is scary at times and draining of resources it is also a gift. It’s taught her The Father’s love, how to trust Him- it’s built her deep faith at a very young age. It continually leads our family to His feet of mercy. Coupled that eternal treasure with this precious girl of ours and I think we won that big one in a million jackpot.

Thank you Lord for all your gifts, even the rare ones which the world will label harshly. You call them good and gifts. What a treasure you gifted us with when you gave her life and gave her to us! Today and every day we thank you for this “rare” girl-gift.


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