Rittenhouse Philadelphia Photographer

Meet Gracie O!

Miss Grace was born into this world in September 2013.  She’s a very happy girl, who smiles at everyone and LOVES her big sister.  She wears earrings and has the most adorable smile.  Gracie has 2 WONDERFUL parents, who learned shortly after her birth that she was diagnosed with Goldenhar Syndrome complicated by Hydrocephalus.

Her mom says: “We knew at twenty weeks something was wrong. The shape of her head was abnormal; then we went through weeks of terrifying diagnoses and finally had a fetal MRI done.  At that time, all they saw was possible hydrocephalus. They didn’t know about the Goldenhar until she was born.  She started developing signs of hydrocephalus around 4-6weeks of age then had her shunt placed at 8 weeks old.”  She also tells me “Gracie has had six brain surgeries so far, along with 8 other surgeries and procedures.”

If you look at her now, Gracie’s left ear (the one that is formed normally) is actually the ear she is deaf in.  For some reason, a cochlear nerve never developed and they have no idea why because it’s not part of her syndrome. At the present, her hearing with her hearing aid on has tested normal.

She has vision in both eyes, but they think the right eyes’ vision is definitely impaired can only see figures, colors, etc.  Sorta like super cloudy vision.

Her mom said: “It’s amazing because everyone expected her to be developmentally delayed and they really didn’t think a hearing aid would work for her.  (Developmentally she’s right on track and) she just keeps showing everyone they’re wrong!”

I met Gracie for the first time at her newborn session, when she was about 2-3 weeks old.  Her sweet face had me from the minute I saw her.  Big sister was SUCH a great girl, listening to everything  I asked her to do for the session and helped us get some wonderful images.

Here is one from her newborn session:

I follow her mommy on Facebook regularly and love watching her grow.  Over the past year and a half, she’s spent lots of time at CHOP, but lately it’s been more frequent.  She’s so brave and always has a smile in her photos, I just couldn’t wait to see her again so I asked mom if we could get together for a session at Rittenhouse Square for an updated portrait (and for me to just visit their family again).  Gosh, how the girls have grown!!  They looked adorable and you can tell that Gracie is letting NOTHING stand in the way of being a toddler.

This is Gracie now:

 This is her sister:

Here they are together:

And here’s the whole clan:

Gracie, like your mommy says, “You’re the best”!  Your smile is contagious and your personality is delightful.  The love you have for your sister, mom and dad is captivating!  I hope to photograph your yearly and watch you grow.  Thanks for sharing your story with us!