A St. Petersburg family hopes a clinical trial in Seattle can save their son's life.
Two-year-old Oliver Stanek was born with a rare disease that requires caused bi-weekly blood transfusions and prevents him from going in the sun.
The blinds always have to stay closed in Oliver's bedroom. In fact, all the windows in the home are covered and the playground is off limits during the day.
Oliver has congenital erythropoietic porphyria, which makes him extremely photosensitive.
“We have to shield him at all times," said Dan Stanek, the child's father. "Even if we go anywhere, we have to have a blanket in the window of the car."
Oliver wears a backpack that contains IV medication that gets rid of excess iron in his liver from all the frequent blood transfusions. His disease is so rare his parents say there's been fewer than 300 cases ever.
“There’s only been about 200 to 250 reported cases worldwide," Dan Stanek said.
The St. Petersburg family is trying to raise $20,000 through a Go-Fund-Me account. It would help pay for a trip to Seattle's Children's Hospital for a clinical trial surgery that could save Oliver's life.
“Without a doubt, this is his greatest chance of one, surviving another transplant, and two, curing his disease,” said Nicole Zimmardo, Oliver’s mom.
Zimmardo said her son still plays like other boys and is happy. He just can't go out into the sun.
“He’s the happiest person to be around," she said. "He doesn’t even know he’s sick. I mean, he was born with it. So, this is all he knows.”
The family said the disease is caused when parents have the rare same gene mutations.
Oliver's father works for Bright House Networks, parent company of Bay News 9.