FAIRBANKS – When Tracey Porreca saw a photo of her son atop a mountain near Hatcher Pass last July, she cried. For the first summer in his 25 years of life, Nicholas Sandrock had reached the summit. It was a sight Porreca didn’t think she’d ever see.
When Sandrock was born, it immediately was obvious there was something wrong. He was limp and his muscles were flabby. As years passed, he couldn’t walk and was delayed developmentally. His bones were soft and “it was like there was no bone on the top of his head.”
Porreca is a Delta Junction photographer who was living Outside when Nicholas was born. She said she had issues as a child — her front teeth fell out when she was 2, she had trouble learning to walk and always had trouble keeping up with other kids. But she passed her military physical, barely, and went into the Navy. She got married and her first child had some of the same problems Porreca had, but her second was healthy. Then Nicholas was born.
Nicholas was very ill and spent much of his childhood in a wheelchair because he couldn’t walk long distances. He never could ride a bike because he didn’t have the muscle strength and he had more than a dozen surgeries, but he eventually improved and made it to adulthood. In February, he started taking the new drug.
“And just in July, I think it was, he sent me these pictures and he climbed one of the mountains at Hatcher Pass with his buddies,” she said. “You can see Independence Mine and it’s like this little itty bitty, you can barely even tell it’s a building off in the distance. And I cried.”
Click here for the YouTube video that Tracey put together of some of the kids with HPP, to see who the awareness campaign benefits.
Fairbanks Daily News Miner