Rare & Beautiful- a rare disease session with a sweet little girl| Amanda Roeben Artistry, Greenville photographer

When Skylah’s mommy came to me about doing a special type of princess for a day session in Greenville for Skylah, I was so excited to get started with the planning! Her baby girl is sweet and spunky and she has more personality than most adults I know. You wouldn’t have a clue that Skylah suffers from a rare genetic disorder that causes her to stop breathing over and over again at night.¬†She has to use a mask ventilator, oxygen, and monitoring anytime she’s sleeping. Blue Jean ribbons represent rare and genetic diseases, so for Skylah’s second outfit (her mom handmade both with love, then passed them on to me to use on future little girls that come to me for photo sessions), her mom chose to make her a blue jean skirt and she custom made her Rare and Beautiful shirt. Being a photographer is my passion and it’s sessions like these that remind me so well of why I do what I do. Thank you Skylah and mommy Dodee for letting me into your world for a few hours. I am touched and blessed to have been a part of such an amazing session.

 

Love always,

 

Amanda

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