Post by Joanna on Mar 24, 2015 22:47:17 GMT -5
Florida Toddler Suffers from 'Vampire' Disease
ST. PETERSBURG, Fla. – A family is tangling with a rare disease that makes sunlight a severe threat to their toddler – a problem much more appropriate to vampires than adorable 2-year-olds. Little Oliver Stanek is suffering from congenital erythropoietic porphyria, which means he must stay out of the sun to avoid burning his highly sensitive skin and undergo blood transfusions every seven to 10 days.
Dealing with the disease has taken a toll on Oliver and his family, but the child deserves the same designation as his Batman and Robin action figures, his mother Nichole Zimmardo told WTSP TV. "We like to call him a superhero: superhero Oliver," Zimmardo said.
And his parents are fighting to help the brave boy battle the disease – of which there are only several hundred reported cases – by raising funds to help Oliver participate in a clinical trial that would be his second bone marrow transplant and hopefully cure him of the condition for good. The fund has already gotten $14,000 in donations from 184 donors.
Zimmardo posted an appreciative message to the family’s supporters following the TV report, noting the family expects to temporarily relocate to Seattle for the procedure in May, if all goes according to plan. “No way did I think Oliver's story would reach as far as it did,” Zimmardo wrote. “The response has been crazy and people are donating from all over the country. I seriously cannot express my gratitude enough or even well enough for that matter.”
Source: Tobias Salinger, The New York Daily News, March 3, 2015.
