Finding hope and healing in a remote stretch of Alaska
Eleven-year-old James Weatherwax has Apert syndrome, an extremely rare condition which fused his bones in the wrong places, making everyday life a struggle, one that led his mother Kecia to bring her son to her ancestral home on Prince of Wales Island in far-off Alaska.
Our own Kim Murphy has been following James and his mother’s fight through everyday hardships and constant surgeries, but amid the difficulties, the two have found a loving home:
Most people here don’t seem to notice James’ appearance, or are sidetracked by his infectious good humor. Johnny Roberts says he got to know James the day he confronted some boys who were bullying him. “He came over and gave me a big hug, and we’ve been good friends ever since,” Johnny says.
As recounted by photographer Genaro Molina, who found it hard to maintain the “fly on the wall” mindset typical of photojournalists:
…on the day of the surgery, James’ tears were hard to hold back. While on the gurney in the operating room he tearfully shouted, “I want my grandfather!” Remembering his grandfather was back at home, James shouted, “I want Genaro!” The medical personnel looked in my direction. My heart sank. I reassured James that I was one of the individuals in surgical attire and that I was there with him.
There comes a point in many stories where you make a certain connection with the subject, and it doesn’t get any more dramatic than this. How could I not root for this kid?
See all of Molina’s fantastic photos at Framework, or read Murphy’s heartwarming story here.
Photos: Genario Molina / Los Angeles Times