Nine-year-old Ben Pierce has a wish list.
It’s a long one, with things like going skiing and visiting a chocolate factory, Harry Potter World, the deserts of Utah, McDonald Observatory, London and Paris.
On Thursday, his siblings — and boxes of Valentine’s Day truffles — were working to make it happen.
Ben started the list after his vision therapist told him and his parents it was time to fill his life with experiences so that when his vision is gone, he’ll have visual memories.
Ben was born prematurely. At 1 pound, 6 ounces, he was big for a little one at about 23 weeks gestation. The doctors were frank, his parents said: If he lived, he could have cerebral palsy, or be deaf or blind.
As Ben grew in the neonatal intensive care unit, doctors saw that the capillaries in his eyes weren’t growing in the right direction, said his father, Kit Pierce. A laser treatment helped correct it, but it also caused scarring that affects how his eyes grow as he grows.
Ben wears thick, tinted glasses to help with his vision, about the most help he can get from corrective lenses, Pierce said. Last November, during a vision evaluation, Ben’s doctor noticed that Ben had lost most of his peripheral vision. The degenerative nature of his disease, known as retinopathy of prematurity, meant he would lose his vision, but his parents thought they would have a little more time.
“We’d hope he could learn to drive,” said his mother, Heidi Thaden-Pierce, “but now that’s out of the question.”
The news has affected his older brother, Christopher, 12, and sister, Moira, 10, a little more than his younger siblings, Emy, 7, Joseph, 5, and Olivia, 3, she said.
They wanted to do what they could to help make Ben’s wish list happen. They offer a babysitting service and Christopher bakes ciabatta bread for a small cadre of customers. For many holidays, they make boxes of truffles for family and friends. Thursday afternoon, Joseph and Moira were dipping another batch of double-chocolate cheesecake and orange truffles for Valentine’s Day. They plan on making peppermint for St. Patrick’s Day.
Thaden-Pierce said the projects are good for the kids, who are homeschooled. They have to think about their pricing — a box of two truffles for $2 or six for $5, for example — as well as their expenses.
“They have to keep a ledger,” Thaden-Pierce said.
For the siblings, there is value in being able to do something constructive as the family faces such a big change, the parents said. But they certainly don’t expect the kids’ projects to pay for things like a trip to Europe.
“We’ll have to meet them halfway,” Thaden-Pierce said.
“More than halfway,” Pierce added.
The change is coming on so gradually for Ben, he shrugs his shoulders at the future. He enjoys the adventures in his favorite stories, such as Harry Potter, which have inspired his dreams at night.
Some have come with strong feelings of vertigo, he said.
“In one, it’s night and I’m on the edge of a cliff,” Ben said. “I’m on a bike, but it’s not me, it’s Harry.”
He bikes right over the cliff, like flying, he said.
“I keep going,” he added.
PEGGY HEINKEL-WOLFE can be reached at 940-566-6881 and via Twitter at @phwolfeDRC.