ST. PETERSBURG, Fla. - Saturday was Rare Disease Awareness day. It's meant to build awareness for people living with a rare disease and their families worldwide. Even diseases impacting people right here in Tampa Bay. 10 News reporter Sarah Hagen spoke with 2-year-old Oliver and his family about his unusual condition that requires him to hide from the sun and get blood transfusions weekly.
Some people frown when we get a rainy, dreary day like today in Florida, but for Oliver Stanek it's a day worth smiling about.
"We like to call him a superhero: superhero Oliver," said Nichole Zimmardo. Oliver likes to play with Batman and Robin action figures. His mom and dad said those might be his inspiration, but Oliver is theirs. "Our tiny superhero."
It's not always smiles though, Oliver's condition causes him pain.
His parents saw the first sign of his condition when he was a premature baby in the neonatal intensive-care unit. "Under the UV lamp - it burned his entire body [and] blistered [him] black and blue."
Turns out - he has a condition that only hundreds of other people worldwide have had. "Congenital Erythropoietic Porphyria--we call it CEP," said Zimmardo. She goes on to say that some people say it's where the legend of the vampire originated.
"He produces red blood cells but they die really quickly. He is getting blood transfusions every 7-10 days which is a lot and damaging to the body." He has to hide from the sun.
The family says there is a cure through a bone marrow transplant. Oliver has already had one and is about to get another under a clinical trial.
A GoFundMe has been created for Oliver, to help donate for his clinical trial for a second transplant and a chance of survical, click HERE.
To learn more about Congenital Erythropoietic Porphyria, click HERE.
There are millions of families, friends and care-takers whose daily lives are impacted by rare diseases, if you would like to learn more about National Rare Disease Day, click HERE.
