I’ve thought a lot about Danny since my photo session with him and his family Dec 13th. He has Tay-Sachs Disease, which you’ve likely never heard of . Tay-Sachs, according to the National Institutes of Health, is:
“… a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.
The most common form of Tay-Sachs disease becomes apparent in infancy. Infants with this disorder typically appear normal until the age of 3 to 6 months, when their development slows and muscles used for movement weaken. Affected infants lose motor skills such as turning over, sitting, and crawling. They also develop an exaggerated startle reaction to loud noises. As the disease progresses, children with Tay-Sachs disease experience seizures, vision and hearing loss, intellectual disability, and paralysis. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. Children with this severe infantile form of Tay-Sachs disease usually live only into early childhood.”
Sometimes I cultivate a distaste for definitions. Yet, sometimes they are necessary to help us understand. Danny is so much more than the grouping of words that describe his conditions above. I thought about him frequently during the holidays and again on his second birthday, December 31st.
I can’t tell you a lot about him or his family. I entered their home to create a memory. I didn’t ask, not because I didn’t care, but because I didn’t feel they needed to relive their journey to the stranger with a camera. They just needed to remember this Christmas, this birthday, this moment.
I can tell you what I saw while I snapped image after image and what I felt when I left. I saw a family decorated with joy and resilience, the way their tree was adorned with ornaments. I felt the presence of moments hanging so fragile and so beautiful, like the bright, glass globes that dangled from the limbs and when I left, I was renewed in the challenge to decorate my life as a Christmas tree, everyday.
Please consider making a donation to support families affected by Tay Sachs and to benefit research development. (Click here.)