This was a very special session for a very special little boy. Sean has chromosome 18q syndrome. It is a rare chromosomal disorder that produces several complications, including cognitive delays, muscle weakness, vision problems, etc. Because of this syndrome, he also has cerebral palsy. At 5 years of age, Sean struggles to lift his head and cannot sit unassisted. While he has sight, he does not process what he sees. As his parents described to me, it is like looking through swiss cheese. And while he does not speak, Sean cooed and made noises that made it clear when he was happy.
He was a very smiley little boy, and nothing made him smile more than when his daddy held him under the arms on his lap while facing him. Most of these pictures show the happiness he feels while playing with his parents, but also do not show the physical support they are providing to him.
For the photographers out there, I would like to note several things that made this session very difficult. While I could place Sean in a spot according to the best lighting, he would frequently roll his head, so I could not control lighting as much as I would like. Another obstacle was eye contact. The combination of cognitive delays mixed with visual impairment made it difficult to get him to look in my direction. We used rattles to get his attention, but it did not always work. To compensate for this, I strove to capture his happiness in general and not worry about direct eye contact. The last obvious struggle was his general weakness which hindered him holding his head up. I think I gave Sean quite the workout by the end of the session!
This family showed me courage, strength, and love like no other, and I as honored to photograph them.
