Ashley McNamara Photography

I had the pleasure of photographing one of the most amazing families today! In august I was contacted by a friend of this family, she wanted to purchase a gift certificate for a baby shower…She told me that it was for a woman who was expecting twins she also told me of their beautiful three year old daughter who suffers from a rare degenerative disorder called Krabbe Disease, Krabbe disease occurs in about 1 in 100,000 births.

“Krabbe disease is caused by mutations in the GALC gene, which causes a deficiency of an enzyme called galactosylceramidase. The buildup of unmetabolized lipids affects the growth of the nerve’s protective myelin sheath (the covering that insulates many nerves) and causes severe degeneration of mental and motor skills. As part of a group of disorders known as leukodystrophies, Krabbe disease results from the imperfect growth and development of myelin.”

Little “O” was not expected to make it past her second birthday but she will soon celebrate her fourth!! The purpose of my shoot was to capture these sisters together because unfortunately their time is limited…I feel so honored to be able to capture these moments and I just hope I did beautiful little “O” justice.