Meet baby girl Natalie… this sweet baby girl came to my studio this weekend and I have to say, she absolutely captured my heart. She is 6 months old and has the most beautiful brown eyes and such a great personality.
But, precious little Natalie has a story to tell. You see, I was supposed to do Natalie’s newborn session. But shortly after her birth, I received an email from Natalie’s mommy. Natalie was going to be in the Nicu because she was unable to feed. The doctors did not know what was wrong and were forced to put baby girl on a feeding tube… I can only imagine how scared her parents were at this point.
It took the doctors a couple of weeks to figure out what was going on. Finally, Natalie was diagnosed with a rare syndrome called Prader-Willi. This diagnosis was devastating to Natalie’s parents! When I heard the news, I’ll admit, my heart absolutely broke for them. To feel utterly helpless and to know your baby will face many life challenges has got to be one of the worst feelings for a parent to endure.
A few months went by before I heard from Natalie’s mommy again. They had settled into their new routine and were ready for photos of their baby girl and her big brother. I was so thrilled to finally meet this brave little girl, who has endured so much in her little life. Natalie’s parents are so obviously in love with their children are enthusiastic about spreading awareness of Natalie’s diagnosis. You see, it is such an uncommon syndrome that many have never heard of it… many doctors do not know how to treat it.
This diagnosis will bring about many challenges in Natalie’s life. To name a few: Low muscle tone (causing delayed sitting, crawling, problems walking, etc), cognitive disabilities, and uncontrollable chronic feelings of hunger leading to life-threatening obesity (never feeling full despite food intake and needing a padlock on the fridge/cabinets to limit food availability!) This is life threatening and very serious. To find out more about Prader-Willi, please visit: http://www.pwsausa.org/
Though Natalie will face many challenges, I have no doubt that she will move mountains. She has the support of her parents, who show so much love and pride for their little girl. I am so happy that they chose me to help spread the word on Prader-Willi syndrome. And because no post should end without photos, I am so proud to introduce Natalie and big brother, Andrew!