Ben Pierce was born at 23 weeks, weighing only one pound and six ounces. He was so tiny his eyelids were fused shut. His mother, Heidi Thaden-Pierce, said, “My hope was just to see him before he passed, I just wanted to be out of the general long enough to say hello and good bye.”
However, Ben beat the odds and survived. But when he was just two months old, he was diagnosed with retinopathy of prematurity. Unfortunately, the scar tissue that resulted from eye surgery caused his vision to deteriorate, and now his family is told it will be only be a matter of time before Ben loses his eyesight completely.
“When we received the news that his eyesight had changed so dramatically we immediately began Ben’s wish list. What did he want to see, where did he want to go, what could we help him experience visually before he lost more sight… One of his therapists explained that as he gets older it will be easier for him to describe things and interact with the sighted world if he has memories of things – like snow, she said, or the ocean or a mountain. And of course beyond the practical logistics of it, we wanted to help Ben have the emotional experience of witnessing this wild and wonderful world!”
To make Ben’s wishes come true, Ben’s mother told People Magazine that his five siblings have donated their allowances and have made truffles to sell to friends and neighbors. Thaden-Pierce said, “His siblings have been having a really hard time watching him struggle with this. They say, ‘How can we have family movie night if Ben can’t watch?’ They want to do something tangible to help their little brother.”
So far, some of the places Ben and his family have visited include the Doctor Who and Harry Potter studios in England, southern California, the redwood forest, the Northern Lights, and the Grand Canyon. They’ve also visited NASA and learned how ice cream is made.
Thaden-Pierce said, “…Some of Ben’s list makes me laugh – like the Apple store. Others have me curious (a bike store, or chalk under a microscope??)” She said, “Almost every day he pops into our room after bedtime and says, “May I see a photo of a glacier?” or “Can you show me Mount Rushmore?” or “I want to see the Sistine Chapel. It takes all my self control to not cry every time he asks me to show him these things.”
Learn more about Ben’s diagnosis and his wish list in the video below.