FORT MYERS, Fla. -- Finding out your child is sick isn’t easy for any parent, especially if it means they are at risk for cancer. A family new to Southwest Florida is trying to raise awareness for a rare genetic disorder their twins have.
“When you first hear about it, you hear cancer, and that’s all you can hear,” said Rosalee Orellana, Fort Myers.
It’s called Beckwith Wiedemann Syndrome and identical twins Marianna and Camilla have it. Children with BWS have a higher risk of childhood cancer.
“Early detection and the protocols is what is key to this, if they are having cancer screenings every three months they are going to catch something,” said Orellana.
The girls have cancer screenings and bloodwork done every three months until they turn eight. Some symptoms include an enlarged tongue and an overgrowth on one side of the body.
“When they get older and start to ask questions and let them know that this is something we are doing to protect you,” said Orellana.
This Saturday is National Beckwith Wiedemann Syndrome Awareness Day and Rosalee and her family are hosting an Alex’s Lemonade Stand. It'll be held Friday, April 5 at Millennial Brewing Company in downtown Fort Myers from 5pm-10pm. Donations will go towards BWS research.
